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A place to talk Support Group

cmack

Moderator
Staff member
I hope you feel better soon Ron.
 

cmack

Moderator
Staff member
My brother, who has been estranged for 10 years, by his own choosing, has people still coming here looking for him. It's so hard to deal with, especially because it upsets my mother and father so much that he has abandoned the family. It's like rubbing salt in a wound. And it just happened again! Arrrrghh!
 

cmack

Moderator
Staff member
Thanks Ron, it's just that I had expected it to stop by now. It's quite annoying and disappointing to me, but today is another day.
 
My surgeons told me I can slowly start doing things that require lifting but no squatting at all.So this morning I did some laundry...I know exciting I was fine doing it but once I finished my spasms were the worst I’ve had so far but they told me that would likely happen.
 

Lynda Lynda

Senior Member
Gram is still here ? Hi Gram !

I must put my recent Ulcerative Colitis symptoms in perspective ! I am at home worrying and panicking because of my high calprotectin level and the fact that I cannot see my Nurse Practitioner until March 26th. Well today I found out that one of my neighbors is suffering from Multiple Sclerosis. and another neighbor has a mechanical heart valve and he goes to kidney dialysis on a regular basis.... and he is on a kidney transplant waiting list. Holy Cow !

I must take a deep breath and relax and realize how lucky I am. My anxiety seems to take over and starts rollin down a hill like a snowball gathering momentum.

Okay, so is there a thread here that talks about the camera pill ?

Wishing everyone a great week.
 
The only one I have seen right away is under the section called Parents of Kids with IBD. You could always start your own thread.
 

cmack

Moderator
Staff member
You have my support, Lynda. I have anxiety too. Feel free to chat me up any time, I'm friendly. :)
 
I did the camera pill about 10 years ago. Large pill back then, aspirated on it! Then it got stuck in the TI and after 7 days when they were prepping me for surgery I finally passed it. Had tons of steroids and cocktails of who knows what was really sick. Sorry to scare you I'm sure it's better now. I also have a REALLY hard time swallowing pills so ya. It gave a lot of good intel though and went on quite a few meds. This is when I was first diagnosed with Crohns.
 

Lynda Lynda

Senior Member
My sister will not take me to my colonoscopy next week. She is leaving town on April 1st and she won't stay 3 extra days to help me out. We are normally good sisters to each other, but a fight on the phone today and all that is over. I have no friends. If my Aunt who lives here cannot take me, then I will cancel my colonoscopy. There is a local crohns support group here this Wednesday evening and I will try going to their meeting to get help. My relationship with my sister is over. She is retired and no has no job to go to and no real "schedule." She is a winter visitor here, then she goes back to Idaho. I looked at my colonoscopy paperwork and it says that someone must drive me to my appointment and they must stay in the lobby during my procedure and then they would drive me home. My Gastroenterologist has squeezed me in for this early appointment so that I would not have to wait until May. I am only drinking liquids right now with watery diarrhea 4-6 times a day. I have a neighbor who is acquaintance who actually volunteered to take a day off from her job to help me but I can't ask her to do that, she needs to work and we are neighbors, not best friends or anything. This whole situation has turned into a chaotic mess and a sister/sister relationship is lost forever. I admit that I acted a bit irrationally on the phone with my sister today, but when she hesitated to answer my request I was let down and then when she actually would not stay 3 extra days had me reeling. It's over. How embarrassing to knock on my neighbor's front door in tears this morning - that has never happened before. I only really have a couple of days to find a person to help me. A terrible day today and very disappointing. I turned into an evil monster while texting my sister today, she told me to call my Aunt. This is a very disturbing situation for me, very stressfull.
 
Lynda, i am sorry for what has happened between you and your sister. I hope that you and her can work ot out. I also hope you can make it to your cokonoscopy. That wss sweet of your neighbor that she made the offer.
 

Lynda Lynda

Senior Member
Lynda, i am sorry for what has happened between you and your sister. I hope that you and her can work ot out. I also hope you can make it to your cokonoscopy. That wss sweet of your neighbor that she made the offer.
Thank You for replying to my text. You are always here when someone needs you. The kindness of one of my neighbors made me realize that there are good people in this world. No, I have no interest in reconciling with my sister, I tried my best to explain my health situation to her but she still wanted to speak to my Family Nurse Practitioner at my Gastroenterologists office ! I have had UC for 20 years. I am so terribly hurt by my sister for not being there for me. But I had some luck today with help from my Gastroenterologists office, I have contacted a local Care Givers organization referred to me by my Gastroenterologists office. I have made arrangements with this organimation for them to drive me to my colonoscopy, stay in the lobby during my procedure and drive me home. It cost $30 an hour, but I have no other options. It is comforting to know that the gracious folks of Sun City, Arizona have many organizations to help out the elderly folk who live there and for people like me too. ( Sun City, AZ is a city here, a retirement community here for folks 55 years and older which caters in every way to the seniors living there......it is called City of Volunteers. )
I think I am calmed down now and happy to find a resolution to my transportation problems. Now I can relax.....and drive to the store to buy more Jello !
 

cmack

Moderator
Staff member
I'm happy for you Lynda, it's nice when people help one another. Best of luck with the colonoscopy.
 
Thank You for replying to my text. You are always here when someone needs you. The kindness of one of my neighbors made me realize that there are good people in this world. No, I have no interest in reconciling with my sister, I tried my best to explain my health situation to her but she still wanted to speak to my Family Nurse Practitioner at my Gastroenterologists office ! I have had UC for 20 years. I am so terribly hurt by my sister for not being there for me. But I had some luck today with help from my Gastroenterologists office, I have contacted a local Care Givers organization referred to me by my Gastroenterologists office. I have made arrangements with this organimation for them to drive me to my colonoscopy, stay in the lobby during my procedure and drive me home. It cost $30 an hour, but I have no other options. It is comforting to know that the gracious folks of Sun City, Arizona have many organizations to help out the elderly folk who live there and for people like me too. ( Sun City, AZ is a city here, a retirement community here for folks 55 years and older which caters in every way to the seniors living there......it is called City of Volunteers. )
I think I am calmed down now and happy to find a resolution to my transportation problems. Now I can relax.....and drive to the store to buy more Jello !
I used care giver organizations for awhile in Yakima it was really convenient. Definitely go to the support group there is so much you can learn and help each other. Breaks my heart about your sister, I cannot imagine life without mine. But you can get other "sisters" through a group or friends. It's amazing how many people have intestinal issues and can relate on some level. Washington is a bit far or I would have drove you. Take care.
 

Lynda Lynda

Senior Member
I'm depressed.
Thinking about money. 💸💸

I need to write a grateful list.
I feel stupid for worrying about things in my life when some of my neighbors only have a mattress to sleep on, have no car and go to food banks so they can eat. 🍎

My sister and I text or e-mail each other. I am trying to text one time a week and stick with neutral subjects. She has no idea we actually had a "fight" in March. ❔

I'm trying my hardest not to text her about my health issues or money. I dont feel like sharing those things with her any longer. 🤐

She texted me that she is going on a biologic for her RA. She is telling me about her health isurance and her call to the drug company to apply for help on the cost. Wierd that she and I are going through the same thing at the same time. I'm still not going to share. Let HER vent to ME instead of the other way around for change. 🐥

Take Care and Have A Good Week. 🏜
 

cmack

Moderator
Staff member
I'm glad you two are keeping in touch Lynda, maybe she will come around. I always try to think of five things I'm grateful for before I get too upset. You sound like you do it too, I think it helps me.
 
That’s good and healing to keep in touch, but hard. I would share because maybe you both will have ideas or tips to help and say what works or doesn’t. Also doctors love family history. I know hard you are strong with all you deal with in your life. Everyone has different levels of what they are going through, do t discount yours just because someone’s seem worse. It still is affecting you and you still need to own it to learn and heal from it. Lord continue to help Lynda and her sister and her neighbors, amen.
 
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 :''(
 
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 :''(
Sorry. Please know that you can come here at any time and know that you will find support.
 

cmack

Moderator
Staff member
Hi Miamei,

You have my support. I hope now that the problem has been identified it will be repaired quickly. You can talk about anything here, it's good to talk.


Regards,

Chris
 
Thank you so much guys <3

Sorry for the swearing, I'm just really frustrated and tired about this stupid illness.. Why won't it just stay in my bowel?? I'm prepared and used to that, and it should be enough for it.. :'D

Now my doctor put me in line to get MRI to check out the situation, which is so great! We'll get some certainty and find out how big the problem is..

Also I'm happy that I finally got to this forum. I've sort of been in denial about my illness this whole ten years of being sick, pretending to be the same as anyone else and never thinking about it. Yet feeling angry and sad for being sick all the time..

I guess I should start being realistic and talk about it instead of trying to look past it all the time..
 

Lynda Lynda

Senior Member
Miamei :
Glad you are here.
Vent all you want.
Lots of good folks here.
I learn a lot from reading all the posts, it has helped me to be more educated about my disease. I have learned more here than from some of my doctors?

Take Care.
Lynda
 

Lynda Lynda

Senior Member
Ok. I just read a Stelara thread and so now I am even more nervous about this whole Humira process. I am waiting for my health insurance company to approve my Humira. I was just diagnosed with Crohn's and have not been prescribed any other drugs before this Humira. I'm afraid my health insurance company will deny the Humira because I have not failed any other drug first. Also waiting for a foundation to tell me if I qualify for their Humira cost assistance. If they approve me then my Humira would be free, no cost to me.
Lynda
 

cmack

Moderator
Staff member
Hang in there, Lynda. I know for me the uncertainty of things is hard to deal with, you have my support. Hugs.
 
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.
 
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.
 

Lynda Lynda

Senior Member
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.
 
I’m not just so fed up with crohns((I’m sure I have it far easier than most) but I’m 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 doesn’t always work. It’s definately not working right now.

I wish someone could just tell me what’s the purpose for all this suffering!
 
I don't know but you have my prayers and support.
I’m not just so fed up with crohns((I’m sure I have it far easier than most) but I’m 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 doesn’t always work. It’s definately not working right now.

I wish someone could just tell me what’s the purpose for all this suffering!
 

cmack

Moderator
Staff member
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.
 

Lynda Lynda

Senior Member
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. 🐥
 

Lynda Lynda

Senior Member
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.
 

cmack

Moderator
Staff member
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.
 

Lynda Lynda

Senior Member
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 !! 🧐
 

Lynda Lynda

Senior Member
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.

🙂
 

cmack

Moderator
Staff member
Not sure, maybe they are having a bad day? There are certainly more intelligent words to use than that.
 
Hi all I’m 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 I’m 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.
 

Lynda Lynda

Senior Member
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. 🙂
 
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 it’s encouraging when things actually get better it’s a slow process and I’ve 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 he’s booked solid so I’m on a wait list but It anybody cancels I could get an appointment at anytime.
 

cmack

Moderator
Staff member
Hey Tubes! Good to see you around. I'm glad things are coming along so well for you. :) Cheers to that!
 
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 I’m so overwhelmingly awesome(not his exact words but it’s what he wanted to say I could see it in his eyes and the eyes much like my hips don’t lie) and positive even though I’ve 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 he’s 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 I’m a ray of sunshine on a cloudy day and he’s hoping my awesomeness rubs off on them and they realize they don’t have it so bad but I’ve tried these support groups a few times and they were just awful as I’m not a fan of being around nasty people.
 

cmack

Moderator
Staff member
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!
 
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.
 

cmack

Moderator
Staff member
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.
Yup...that's nasty...:ybatty:
 

Lynda Lynda

Senior Member
Me again. I am tired today and venting.

I had an unpleasant first visit with the Family Nurse Practioner at my Gastroenterologists office on March 26th
[ long story. ] Since then I have requested to only see my Gastroenterologist for all my visits there. My doctor knows what my situation was with the FNP because now I have become a better communicator.

My Gastroenterologist is the busiest doctor I have ever seen....office visits, more than one office, colonoscopies/endoscopies and hospital calls....so I am sure that is why they have an FNP there. [ There about 6 Gastroenterologists that practice in that location.]

Anyhow, now that all my testing is done and I have a diagnosis and I have started treatment I will be seeing the FNP on July 9th. Ugh. So now I have to start a friendly and understanding relationship with this FNP because I am sure she is the person I will be seeing from now on. Monday's appointment should not really be a problem because it is just a follow-up type appointment because I started taking the 6mp pill in May and the Humira in June.

[ I have routine blood tests now too. ]

So I am going to try to walk in there with a positive attitude but still be a strong advocate for myself. My Crohns diagnosis is serious and so are these medications. I don't want them cutting out my terminal ileum unless it is totally necessary. I had an unneeded surgery in 2007 on my left kidney that could have been avoided if I had not been suffering from my undiagnosed mental health condition. I couldn't really speak up for myself because I was so "out of it."

Eek, my next Humira shot is Monday morning and its gonna be in my abdomen. I can't wait to do that 😳

Take Care.
 
Vent away, we all understand for sure. I would imagine in Arizona with the age group there doctors would be for sure busy, that bites. Ya I have to fight my doctor each time to not ad a second medication and change my infusions from 8 to 6 weeks which would probably mean a port since I'm such a hard stick.

So stopped taking my pain pill for almost a week and wow did I get bad. This pill puts me in the false assumption that my meds are working I think?? I know the side effect is slowing my bowels but hummm, trying to figure out what to do next.
 

cmack

Moderator
Staff member
When you quit an opiate you will get the runs and other unpleasant feelings. A taper is usually better... I hope you feel better soon, Jane. You have my support. Hugs.
 

cmack

Moderator
Staff member
I hope you are feeling okay, Lynda. You are a strong willed, smart and compassionate lady... Most people will tend to respect that.
 

Lynda Lynda

Senior Member
Thank you Chris. But several times recently I have become overly panicky and made crazy phone calls. This was apparently a temporary thing, as now I am so tired that I don't care to call anywhere to complain about anything! I sure want to blame my new medications. But who knows.

Recently I have made more than one crazy, panicky phone call to the Leasing Office here. One time the freezer in my tiny fridge defrosted overnight and the next morning I opened my fridge and all my Humira boxes were wet ! The Leasing Consultant tried to calm me down. A patient assistance foundation has graciously provided me with that Humira and it's worth thousands of dollars!

Another day a maintenance man was pretending to be a plumber and broke something in my shower, resulting in a gusher of water flooding my bathroom and kitchen and closet floors! The Leasing Office and maintenance men seem to think of flooding my kitchen, bathroom, closet floors plus some of my living room carpeting is NOT a big deal....they down-play everything. I take care of my apartment like I own it, not just rent it.
[ sigh ]

And then another day some water was on my carpet and a tiny puddle on my kitchen floor....supposedly from some kind of condensation from my "chiller unit" ( it is sort of like an air conditioning unit. ) Gosh, water running down the inside of my walls onto my carpet and kitchen floor isn't a big deal to them. Say What ?

The inside of the walls in this place must be full of wet sheetrock and mold. [ I have already had two leak incidents in my bathroom, one that resulted in replacing the rolled flooring in my kitchen, bathroom and closet floors.] Well good grief.

The maintenance men try to calm me down. The Leasing staff and/or the maintenance men never take responsibility for their actions. I do not want any maintenance man in my apartment fixing anything unless I am also in my apartment.

I had bleeding and swollen gums one night and called my dentists office at night to arrange an emergency appointment, which was not needed because I had no infection or anything terrible. Yikes.

And I called my Gastroenterologist office one night and talked to the on-call Gastroenterologist to find out if it was okay for me to take antibiotics ( just in case my dentist wanted to prescribe me antibiotics.)

Right now there is nothing left to complain about. I just want to relax.

I have to calm down, think ahead of time and be smart if I want someone to take me seriously. I'm okay with my dentist office and my Gastroenterologist office. But as far as my Leasing Office, they think I am a lunatic, I suppose. They know my voice on the phone without me telling them my name [ and there are 352 apartments here.] But it is comforting for me to know that some of my other neighbors call the Leasing Office to complain also.....none of us like the quality of the service here.

Take Care and hope you are well. 😊

Lynda .
 
I just want to vent for a minute (and yes I know my GI doctor would not approve). I have been diagnosed with Crohn's for several years. Lately I have been trying to decide if the medicine they put me on is worse than the disease itself. I used to be able to run, workout, and enjoy life. Now the idea of walking around the block gives me a headache. The fatigue is awful and I still have pain regularly. My favorite is when the doctor says, "The medicine is doing as well as can be expected" as he tells me I now have 2 strictures instead of one (SMH). I read about people in remission and how whatever drug they take is a miracle. The medicine just makes new problems and it isn't a miracle for me. I just want my life back.
 

cmack

Moderator
Staff member
Welcome, I'm sorry to hear you are having such a tough time. Maybe you should get an opinion of another GI. You should be feeling better than you are and I hope you are soon. You should stay taking the drugs you are prescribed until such time that a doctor makes any other decision. Sometimes it takes a while to find the right treatment because we are all different. You have my support.
 

Lynda Lynda

Senior Member
Hi ttimes2 : Welcome. [ I love your pfp ] 🙂

Well, I wouldn't recommend going off of your Crohn's medications "cold turkey." Could you go to another doctor to get a second opinion ? A fresh set of eyes might help with what combination of medications work best for you. It would be great if you had a "team" to work with. For example a Gastroenterologist and Nutritionist. I was just diagnosed with Crohn's in April 2018. I agree with being tired all the time, I have been taking this 6mp pill for 2 months now and I have been tired everyday. I don't even do anything in the mornings, no errands or appointments. Too tired. I haven't read a book since May. I am hoping I will build up a tolerance to this 6mp pill. I started taking Humira a month ago. I understand your frustration. I have inflammation and a stricture in my terminal ileum. I don't want to have surgery if I don't have to, so I am willing to deal with these side effects, for now at least. There is no cure for Crohn's and unfortunately no "miracle drug."

There are a lot of support groups here and lots of different threads to read. There are people here you can connect with. Please keep in touch and browse through some of the posts here.

I was browsing through the posts here one day. I read something about a probiotic I had never heard of. I read more posts and asked questions. I mentioned the probiotic to my Family Nurse Practitioner at my Gastroenterologists office recently and she said it would be ok for me to take it. So good to learn something new !

I see that you live in a small town. Would a trip to Portland to see a new GI be possible ?

Lynda 🌻
 
I just want to vent for a minute (and yes I know my GI doctor would not approve). I have been diagnosed with Crohn's for several years. Lately I have been trying to decide if the medicine they put me on is worse than the disease itself. I used to be able to run, workout, and enjoy life. Now the idea of walking around the block gives me a headache. The fatigue is awful and I still have pain regularly. My favorite is when the doctor says, "The medicine is doing as well as can be expected" as he tells me I now have 2 strictures instead of one (SMH). I read about people in remission and how whatever drug they take is a miracle. The medicine just makes new problems and it isn't a miracle for me. I just want my life back.
I definitely feel that way too sometimes, then my doctor reminds me my blood work is better and markers are way better. Ginseng tea helps me a lot with energy. Also, my Tramodol for pain helps with my energy, but wow if I don't take either....what move from my recliner.....so much work.....seriously how can this so wipe you out....crazy.

I once went on a really strict diet from a guy who has/had Crohn's disease called Jordin Rubin it really worked for me for quite a few years then I got to missing junk food and ya messed my self up....why is it so hard to eat right...sigh.

Never stop researching diets and other things out there, I believe it's a combo of things that help us all to get better. It's hard to not be stressed about it when you can panic about a long car ride....but then again when you stress you've now made it worse for yourself. I've been trying to make peace with this disease and trying to find new solutions.

Thoughts and prayers to you.
 

cmack

Moderator
Staff member
I would like to present my bowel disease with a fake right, double left jab, headbutt...Uppercut... then a swift snap kick to the chin. That's just how I feel today... Peace...That felt good.
 
Thanks. It is nice to hear other people are dealing with the same things. I live in a small town with not much of a "Team". I was considering an online nutritionalist. I haven't looked into it to much, but I think I might give it a try.
 

cmack

Moderator
Staff member
I would look into that, nutrition is very important and you should always pursue the right nutrients from whole foods instead of vitamins as much as possible. Vitamins are often needed in addition to good nutrition with these diseases as well. Have you had a test for vitamin deficiencies recently?
 
Diagnosed with pancolitis back in March. Was put on steroids and mesalasine. Worked fine (Although still had rectal soreness and swelling) until early last month when I experienced some bleeding when I went for a BM. Doctor wasn't too concerned and I have an appointment at the clinic in September but I am very anxious. My BM's are always formed, I haven't had diarrhoea since I started meds and no urgency or stomach pain. But I do notice mucus quite a bit in my stool and think I have seen spots of blood. I always have rectal soreness and slight swelling.
I am scared of going onto the 6mps as I think that's what will be suggested. I am hoping rectal meds will be suggested first as I really don't like the idea of weekly blood tests and 3/4 month steroid use while I wait for it to work.
Feeling very emotional and scared these past few days.
 

cmack

Moderator
Staff member
I hope things improve. You have my support, Anxious. I have anxiety as well and I have found that keeping my mind occupied with other thoughts can be helpful. Usually this involves me finding small tasks and getting something accomplished, this is usually enough to get my mind far away from the source of anxiety. I do a small repair job, watch a video or just tidy up my office. I hope you can find an activity that helps you ease your mind.
 
Just wanted to vent here today. Diagnosed in 2008 with uc and ileum involvement. Later changed diagnosis to crohns. Have had many scopes, scans tried all mesalimines with one bout of remission. Most recently had a fistulotomy from an abscess and was put on entyvio. This is all a very shortened story, but wanted to get the points across. Due to employment issues I lost insurance and had to go off all meds. I was on entyvio for a good 6 months but never saw great improvement to what I would consider remission. To today, I’ve obviously been flaring, tried diet, tried cbd oils, even Imodium to no help. I’ve started having upper right abdominal pain and severe diarrhea and some rectal bleeding or at least I think it’s rectal. Stress and anxiety is ruling my life, in order to get the job back that provided great insurance, I need to take and pass three proctor licensing test where you cannot leave for bathroom breaks. I’m up to 15 20 movements a day, painful and urgent. I feel like I’m trapped and the only way out is letting go and letting myself get so bad that I require emergency surgery for anyone to listen and understand how severe I feel physically and emotionally.
 

cmack

Moderator
Staff member
Welcome,

I'm sorry to hear you are dealing with this. That's not fair what happened with insurance. Is there any way you could try to see if you qualify for another drug at reduced rates? Humira has a program where the drug is provided for little to no cost to the patient if you meet certain guidelines. Other companies may have similar programs for people without insurance. Best wishes. Come here to talk any time.
 
Just typed up a huge response and it got lost. Thanks for your reply. I am still doing what I can to accomplish those things in order to get coverage again. I’m just not sure if it’s worth it for me to keep chasing new meds with no response when possibly surgery has it’s downs but better ups. I still don’t know or have the answers and will talk to gi about goods and bass.
 
I would like to present my bowel disease with a fake right, double left jab, headbutt...Uppercut... then a swift snap kick to the chin. That's just how I feel today... Peace...That felt good.
Hey me too, even just found my lavender boxing gloves in a box I was going though. :)
 
I’ve had an eventful past couple weeks my PG wounds came back and spread super quickly causing a ton of skin loss exposing a vein and making my bag not stick well.My bag popped off the skin halfway during a shower causing the wafer to nick the vein and cause excessive blood lost I looked like I was wearing red footie pajamas I couldn’t see my skin I was that covered.I got rushed to the ER and they tried for 2 hours to stop the bleeding nothing was working so they had to stitch up the vein.

Had to get a few units of blood,my joints are killing me(especially my knees) and I’m getting a ton of migraines.I spent today having seeming every test under the sun done to see what’s going on.
 

cmack

Moderator
Staff member
I'm in a state of emergency here in BC due to wildfires. Sorry I was not here sooner. How are you doing now? Give me a shout Tubes
 
I'm in a state of emergency here in BC due to wildfires. Sorry I was not here sooner. How are you doing now? Give me a shout Tubes
Pretty crappy the wound and vein that got stitched up are pretty big and in a bad spot so it’s uncomfortable 24/7 as the wafer of my bag is pressed and rubbing against them and the bag isn’t sticking well.Its hard to sleep seeing when I do I wake up to bleeding or accidents.I’m still waiting for test results and I’m in the process of finding a new wound specialist/stoma nurse as my current one has really dropped the ball and won’t get back to me.Its been fun all around.

Hopefully your doing well.
 

cmack

Moderator
Staff member
I'm thinking of you, Tubes. I hope that vein heals soon so its more comfortable. We know it had some pretty decent blood flow so I'm hopeful it should heal faster than average. It always seems like when we get an injury or need stitches it has to be in a highly inconvenient spot. I'm doing better than I was, I'm staying inside to avoid the heavy smoke.
 
Thanks cmack.I’ve had issues with Doctors within the last year and it’s partly my fault because I’m so easy going and nice to a fault so a lot of times people take advantage of that but I’m quickly learning that I can be a huge dick when the situation dictates because when I’m nice the doctors don’t get back to me but when I’m a dick they immediately get back to me and that’s a terrible message to send but when the doctors don’t get back to me I’m the one that suffers.
 

cmack

Moderator
Staff member
Yup! Sometimes I get to the point of taking charge of a situation myself. I totally get it, I don't like having to be that way either but sometimes it's warranted. ;)
 
A couple of the stitches are starting to dissolve.Last night after I fell asleep my cat decided to sleep on my neck because he’s a jerk he sheds a lot and I woke up in a sneezing fit it hurt so bad with the wound,vein and stitches I would have rather been kicked in the balls.
 

cmack

Moderator
Staff member
Ouch! Sorry to hear that... are you really allergic or what?

Edited to add: I'm very allergic to cats. I still like em though. ;)
 
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No I’m not allergic he just sheds a ton especially in the summer and some of his hair got up my nose and tickled things just right that I couldn’t stop sneezing and I wasn’t able to brace myself because I woke up sneezing and I scared the crap out of him.He’s a jerk but I like him.

Early this year when I had all my surgeries he was fascinated with all the tubes hanging from me be it from the urine bag or the bag from the drainage from the rectum removal so I had to avoid him and make sure the door to my room stayed shut while I rested but whenever someone would check on me he’d sneak in wait for me to fall back asleep and he’d sleep on my lap and stomach and I’d wake up to him clawing at or chewing the tubes.As I said he’s a huge jerk.
 
No I’m not allergic he just sheds a ton especially in the summer and some of his hair got up my nose and tickled things just right that I couldn’t stop sneezing and I wasn’t able to brace myself because I woke up sneezing and I scared the crap out of him.He’s a jerk but I like him.

Early this year when I had all my surgeries he was fascinated with all the tubes hanging from me be it from the urine bag or the bag from the drainage from the rectum removal so I had to avoid him and make sure the door to my room stayed shut while I rested but whenever someone would check on me he’d sneak in wait for me to fall back asleep and he’d sleep on my lap and stomach and I’d wake up to him clawing at or chewing the tubes.As I said he’s a huge jerk.
This just confirmed why I'm glad I don't have any pets anymore WOW.
 
This just confirmed why I'm glad I don't have any pets anymore WOW.
He gets in everything you don’t want him to.What was worse was when i originally had my total colectomy I had a really sweet dog she was a Doberman/German Shepherd mix she was over 150lbs all muscle she was sleeping when I 1st got home from the hospital I took a nap and my mom woke me up to take my antibiotics when my dog heard my voice she got all excited jumped over the gate and leaped on my stomach it was unpleasant.I don’t have a dog anymore.
 

cmack

Moderator
Staff member
No more dogs for me for a while too. I love the little suckers but I need to come first. I will have another dog, but only at the right time in my life. Only God knows when that is.
 
I’ve always had dogs since even before I was born but once she passed I realized it probably wasn’t a good idea to get another one.My nephew has a small bulldog that’s full of energy and because I have a bigger backyard he brings him over to run around like an idiot quite often and the dog loves jumping on my stomach so whenever I think about getting a new dog I remember that and come to my senses.
 

cmack

Moderator
Staff member
Kind of like other peoples kids... fun for a while when you have the gumption. Really great when you can give em back too. You have my support Tubes. I miss my old girl too. Pomeranian and Terrier mixed with a little Coyote... Lived to 16-17...you can imagine all the noise...;)
 
Kind of like other peoples kids... fun for a while when you have the gumption. Really great when you can give em back too. You have my support Tubes. I miss my old girl too. Pomeranian and Terrier mixed with a little Coyote... Lived to 16-17...you can imagine all the noise...;)
A yipper for sure huh. That's why I loved my Wolf/Malamute, he only did that low growl and that was almost never so I way alerted when he did that, he lived to 15. Yep still miss him and he passed in 2000.
 

Lynda Lynda

Senior Member
Thanks cmack.I’ve had issues with Doctors within the last year and it’s partly my fault because I’m so easy going and nice to a fault so a lot of times people take advantage of that but I’m quickly learning that I can be a huge dick when the situation dictates because when I’m nice the doctors don’t get back to me but when I’m a dick they immediately get back to me and that’s a terrible message to send but when the doctors don’t get back to me I’m the one that suffers.
I just read this because I haven't been around recently. but I wanted to say....GOOD FOR YOU !! I found my "inner bitch" this year and after doing so I felt so empowered and I became a better advocate for myself.

Sorry to all members for using the "b" word. 😳
 

Lynda Lynda

Senior Member
Well, I took a two month break but now I want to read more posts to learn more, as I am in a different stage in my "recovery". Dont know if recovery is the right word.
I am on 6mp and Humira and VSL#3.

Anyhow, I have a computer but no internet in my apartment. I cancelled it because of the cost. All my reading and writing here are done on my phone and the print is small and I can't "type" fast.
I am planning on going to the Clubhouse at my apartment complex way more often so that I can use their free wi-fi. Actually they have chairs and a sofa, just like a living room would have. I have to admit those chairs are more comfortable than my old recliner. I can read posts on my computer screen and actually have a keyboard to type with. It will be easier on my eyeballs. There is a small workout room there too, so a treadmill would be a great thing for me to start walking on ( outside temps are over °100 every day. ) And I would be getting away from my apartment more often. My rent money is paying for this Clubhouse, so I should use it !! Another plus, there is bathroom in the Clubhouse. I always gotta make sure one of those is around.
Take Care. 💜
 
Well, I took a two month break but now I want to read more posts to learn more, as I am in a different stage in my "recovery". Dont know if recovery is the right word.
I am on 6mp and Humira and VSL#3.

Anyhow, I have a computer but no internet in my apartment. I cancelled it because of the cost. All my reading and writing here are done on my phone and the print is small and I can't "type" fast.
I am planning on going to the Clubhouse at my apartment complex way more often so that I can use their free wi-fi. Actually they have chairs and a sofa, just like a living room would have. I have to admit those chairs are more comfortable than my old recliner. I can read posts on my computer screen and actually have a keyboard to type with. It will be easier on my eyeballs. There is a small workout room there too, so a treadmill would be a great thing for me to start walking on ( outside temps are over °100 every day. ) And I would be getting away from my apartment more often. My rent money is paying for this Clubhouse, so I should use it !! Another plus, there is bathroom in the Clubhouse. I always gotta make sure one of those is around.
Take Care. 💜
I used to use the library computers too when I didn't have one, if you have one near by just a thought.
:)
 
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