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Got my capsule report today guys

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Posted 4/6/2017 8:53 PM (GMT 0)
So it has been a few weeks (or months?) since your capsule endoscopy? How long exactly? Since it was done pretty early on in your Entyvio treatment, the doc is right that you may be somewhat better now. But do you *feel* any better now? Do you feel like it has made any improvements? I know sometimes it's hard to tell, especially with small bowel disease.

It seems like the doctor is at least listening and taking things seriously. That's a good start. Hopefully the Entyvio is helping more now. Or if not, that you can hang on until other options are out there. In the meantime, try some internet searches for clinical trials in your area and see if you can find anything.
Posted 4/6/2017 9:28 PM (GMT 0)

beave said...
But do you *feel* any better now? Do you feel like it has made any improvements?

No and no :-/

The capsule endoscopy was on the 5th January by the way. I've had one Entvyio infusion since then; my next one is on the 11th April. I'm hoping the next one will help.
Posted 4/6/2017 9:43 PM (GMT 0)
I don't mind my first name at all. I didn't even think about using yours or not, sorry! sad lol.

And yes, the anti-spam is extremely annoying. Once we've made our first thousand posts, we shouldn't have to have it apply to us!
Posted 4/6/2017 11:27 PM (GMT 0)
It's okay, you're not the only one to call me Miranda on here ;p

Yes, that's a good idea about being exempt after the first 1000 posts. Or, alternatively, most spammers are bots, so just putting a question that only humans can answer on the registration form will deter them from even registering.
Posted 4/6/2017 11:40 PM (GMT 0)
I'm glad you had a good visit with GI. I hope the Entyvio will kick in!
Posted 4/7/2017 2:43 AM (GMT 0)
I'm so glad you finally have a good GI doc. What is adacolumn? I've never heard of it.

I'm really sorry about your struggles with your family. You are not responsible for your mother'a drinking and it's up to her to decide to cut back or stop. I strongly suggest that you completely avoid getting into any conversations of substance if she is drinking at all. I can't really imagine what she was thinking when she was going on about your healthier than you brother suffering, but my guess is that the alcohol was sending her in some weird negative direction. You sure didn't need all that family conflict on top of everything else!

Life is too short. Don't go to Easter family dinner if you don't want to, or go, and don't be pressured to eat what you don't want to eat. I hate Crohn's disease and alcoholic relatives are a sad disappointment to have to deal with too.
I think the steroids are a good stopgap idea. I wish I had a suggestion to fix all of this for you, but I do care a lot about you and I hope things get better soon!
Posted 4/7/2017 3:31 AM (GMT 0)
Well, I can't give better advice than gumby did, I agree with everything she said and she likely said it better.. but no, I probably exaggerated about my family a bit. I just cut off my mom because she was toxic. I have a good relationship with my dad, and some other people, especially my grandma, who is a major driving force in my life. I do however live very separately from them, many 1000s of miles away. I wish you weren't having to consider steroids. I really do. I can say that in your shoes, I would be very torn about taking them, as you are. It's like you're doing something that only helps right now, and the future is up in the air, so it makes it almost pointless. Then again, maybe it will be the jump-start to something positive. Were you always distant with your siblings? I was SOOOO close with mine growing up. I feel bad for being less connected with them now. Getting older is a bummer. Last time I saw my sister, when I looked at her, I literally saw myself, and it was the most bizarre, but exciting feeling. I wish I could see her all the time. Our lives are so different it wouldn't be possible right now unfortunately... It might be fun for you to connect with your brother/s, don't give up on it. I know I will connect with mine again in the future, the distance between us is temporary. My sister, not so sure.
Posted 4/7/2017 6:57 AM (GMT 0)
ncot.. glad you got some actual answers.. might I suggest, you take one of the pictures of your intestines and have a water color painting done of it.. I did that many years ago and it came out wonderful.. its on the wall in our living room and people think the colors and shapes are interesting.. till I tell 'em what it is!
Posted 4/7/2017 1:44 PM (GMT 0)
Morning folks. Or rather, afternoon now :p

@Sparkleplenty - Thanks!

@Gumby - I reckon it's easier if I give you a link rather than try to explain what adacolumn is. But basically it's a method of filtering inflammatory white blood cells: /www.crohnsandcolitis.org.uk/news/adacolumn-what-you-need-to-know

As for my mum, me and my dad have accepted that she will be drinking up to the day she dies in all probability. She's 77 and I'm amazed at how good her health has been and still is - touchwood. At least her drinking isn't getting any worse; if anything I would say it's better compared to 10-20 years ago, when she went out more socially - me and my dad used to dread when she came home on Wednesdays, after she'd been drinking all afternoon with her friend. You never knew what type of mood she was going to be in. But that said, sober, my mum has always been a far more easy-going person than my dad.

I haven't decided about Easter yet. If the budesonide has kicked in by then, it will be easier.

@nssg - Ah okay. I'm very glad to hear you are not cut off from your entire family. As for my siblings, I was never close to them as a child. I was the youngest out of 4, and had 3 older brothers who didn't treat me well. They took the piss out of me all the time and called me things like fat and a loser (I was overweight as a child). My mum later on claimed to have never known anything about it. For many years I nurtured a grievance over my childhood, but I would say I'm about 80% over it now. My brothers didn't have it that easy themselves. We had an authoritarian and neurotic dad (a couple of years ago I realised he had high functioning autism, like me, but we hardly knew that at the time). The two older brothers bullied my youngest one. I reckon my youngest brother has some kind of undiagnosed bipolar disorder; he drinks too much and can be emotionally manipulative: I'll be friendly with him but don't really trust him. The middle brother is deffo on the spectrum like me and my dad: that's become more obvious as he's got older. But he's also the brother I get along by far the best with in adulthood. I'll happily spend time with him when he comes to visit. The oldest one is the most responsible and conventionally 'normal' one. He's also the one who has Crohn's as well, and the only one of us to have any children.

Sorry, I got a bit carried away there. I'll end up writing my entire autobiography on HW at this rate. But yeah. I hope in the future you get to see your family more. Living thousands of miles apart is definitely a massive barrier!

@randy - I really want to see that painting. Is there any chance you could take a photo of it and upload it? If not, then that's okay - I guess it is sort of personal in a way.
Posted 4/7/2017 10:19 PM (GMT 0)
haha, I was getting into the story actually. My dad has bipolar too - i remember my sister saying he was "manic depressive" but I was young so I wasn't very familiar with the meaning. The weird part is that nothing really seems to get to him. He doesn't live in reality, and if you confront him with real life issues, he will snap. You would think at his age, he would be able to handle some criticism, but he can't, and if you say anything that upsets him, he shuts down and turns crazy. He only wants to hear happy things. My mom is an awful narcissist. She likely wouldn't have had kids if she were from a different generation - or if she were capable of financing a lifestyle that was appealing to her without relying on a husband. Appearing wealthy was her primary goal in life, in order to get there, she had to comply with the childbearing... my dad was more interested in whatever interested him, than supporting anyone. That drove a huge rift in their relationship and made the entire household pretty miserable. Her goal for my sister and I was to "marry men with money and have kids". That was jammed into our heads for as long as I can remember. She just wanted to be the mother of kids who married well. Interestingly, both of us have careers and do not depend on anyone. Eventually my parents divorced. I knew they would since i was under 8. I always wished they were less selfish and would do it already! They stayed together for convenience - we ended up watching their miserable relationship throughout our entire childhood.... These are the topics that turn my dad psycho. It's as if he wants to pretend everything was perfect & we had a great upbringing. I am sorry to hear your siblings were mean to you. That's sad. I was such a little loser/nerd too, and while i didn't have many friends, my siblings were there for me. I guess in reality, I am a bit of a loner, and family isn't my thing. I don't really celebrate holidays and I hate obligations. I don't want to cook and clean up after anyone, and since that's what women do at holiday and family events, I'll pass! *or maybe that's just my family. Welp, that sums up my whole pathetic life until I moved far, far away. I really hope the entocort works for you & you can go to Easter if you want to. Sitting around alone sometimes gets lonely and depressing, but going to these things can stir up old negativity, and that's not fun either. It just stinks when your IBD makes the decision for you about whether you will go.
Posted 4/8/2017 3:06 AM (GMT 0)
NCOT,

Sorry I've been away and could not get internet. (Had a horrible time with heat making me visciously ill...so went to a cooler locale only to discover no internet available even on my cell. Freaked me out)

I hope the entyvio kicks in. I spoke to a friend and she said it took her 5 or 6 infusions before she noticed any difference. You never know.

I am sorry about the family situation. I completely understand. My Mom used to compare and pit me against my older brother and sister. And she would pit them against me. We didn't develop close relationships and it still bothers me. My mother and brother passed away and it made me realize how much I missed. (But there are times when you may have to place yourself in the time out corner so you can process everything ie...avoid the scoundrels for awhile. ..Lol) Now I am frantically trying to build a relationship with my sister. I see so many wonderful things about her and wonder how I could have been so blind before. So don't give up. You never know when things will change.

Was glad to hear that you have a good doctor that you can trust. He sounds like he is thinking ahead and trying to make additional plans just in case...rather than waiting for the problems to take him by surprise.I hope you feel better soon.

Hang in there!!

Clo

Post Edited (clo2014) : 4/7/2017 9:17:22 PM (GMT-6)

Posted 4/8/2017 12:23 PM (GMT 0)
Guess what's come back again, folks? Uveitis, but just to mix it up and make things more interesting, in my left eye this time. Felt the familiar pain all day yesterday but ignored it until bedtime, whereupon I looked at my left eye and it was red. Luckily I've still got some steroid eye drops from the last attack, so there's no need to see a doctor about it this time.

@nssg - Your dad sounds like mine, at least in the being unable to tolerate criticism part. I don't think my dad is an actual narcissist, but he has some of the traits of one. As for your mum, I just find people like that impossible to understand: do they think they are living in a Jane Austen novel? That said, apparently my mum's mother was hugely concerned with 'respectability' - she was a working-class English woman with 8 kids, so appearing wealthy, let actually being wealthy, would have been an impossible goal. But she could be 'respectable' and by gum she was. Your parents' miserable marriage sounds like my parents' miserable marriage in some ways. But unlike your parents they stayed together. I wouldn't say they are exactly happy nowadays, but things aren't as grim as when I was a child, when they would have the most terrible rows. Needless to say, both of my parents deny that there was ever a serious problem and that all families are "unhappy" sometimes or all brothers and sisters fight.

Family isn't my thing either. I do occasionally miss not having had children, but I'm not very maternal and I'm not sure I would have made a very good mum. I feel more bothered at never having been in a relationship, really, but that's another issue..... :/

@Clo - Heh, yeah, I go into panic mode when my internet goes down. I hope the weather is cooler now: I don't like extreme heat either. Could never live in a really hot country.

I'm sorry about your mum. Some people are just so destructive, they can't even have normal relationships with their own children, let alone anyone else. It's not the children's fault in the slightest, but they are too young to be able to make sense of it at the time. One thing I can say about my parents is that they didn't show any obvious favouritism: of course we have all said to my mum at some point "oh you preferred so and so". But she has always been pretty fair towards all 4 of us.

I hope you succeed in building a relationship with your sister. Talk as honestly with her as you can about the past: hopefully she will respond positively to that.

Yes, you are right about my doctor: he does think ahead. I do too, so that suits me fine.

I will :p
Posted 4/10/2017 6:51 AM (GMT 0)
ncot, I am too stoopid. I don't even have a smart phone. I can noy even send pictures by email unless they are sent to me and I forward them. ;oP it is quite the picture. about a foot by a foot in size.. the the ulcers and such are redish pink to purple with the bowel wall leaning to yellow to almost tan. it like looking into a spinning storm from the top down.
Posted 4/10/2017 2:36 PM (GMT 0)
Hi NiceCupOfTea,

When I was in bad flare last time I was also diagnosed with uveitis. Steroid drops helped but after one month it just stopped working for me. My left eye was affected. My vision was terrible. I was able to see nothing but the white film with some shadows. Once inflammation in the gut was decreased my eye started to heal. Now I see how my eye is always affected if inflammation in the gut is active.

Since I've found that steroid drops have limited power in my case I also consulted my chiro. I know that many of them are not good but my chiro is a great guy and I trust him 100%. He took the x-ray of my neck and has explained to me that my C2 suppresses vagus nerve that connects eyes, lungs, and intestine. After the third adjustment, I was much better. Also, I was on supplements like glutamine, colostrum, and probiotics. Of course, it took time but once I notice small improvements I kept managed uveitis this way. That happened about 7 months ago. I still have few floaters in front of my left eye. Also, he found that something happened with my skull. And he asked me if I had some recent injury or dental work. It is amazing how he was able to see that. I actually had major dental work about 4 months before that time. I spent like 4 hours in a terrible position and he said that it is very common. He says and showed me his school book with section - injured by the dental chair - or something like that. In the end, I really believe not just that but everything else was involved.

Besides that, I was reading a lot about eye health. I've found that high dosage Vitamin C can remarkably protect the eye. Since then, I am on 3-4 grams VitC daily. Also, there is another thing that is great for muscle strength. It is astaxanthin - very powerful antioxidant found in salmon. Researcher says that astaxanthin can help all muscles in our body. It is great for the gut as well since small and large intestine are one large muscle. As we know eye has many muscles as well. I cannot say if this make a significant change or not since I did other things.

Wish you a fast recovery. Try not to worry about things that ar not under your control. People are doing bad things but the truth is whatever we're doing we're doing it to ourselves first. Too bad our loved ones can hurt us the most. But at the end of the day, we don't know what's in another person. Only God knows and that is how I manage situations like what you described.

Hope this can help.
Posted 4/10/2017 3:59 PM (GMT 0)
Randy - Hey, I know people who could build a shed or decorate a house, but probably couldn't join a forum without assistance ;p A smart phone would make it easier to upload images to the internet, but it can be done with a digital camera too; you just need to be able to connect the camera to the computer (usually with a USB cable). At any rate, your picture still sounds really cool.

owleyes - Hi! I'm a bit worried that the steroid drops aren't working as well as they did before - the inflammation is better but not entirely cleared. But maybe that's because I've been slack about using the drops: I'm going to try using the drops once every 2 hours and seeing if that boshes it on the head. I'm also having my fifth Entyvio infusion tomorrow, so - while Entyvio isn't meant to have any systemic effects - I'm still somehow hoping it helps.

I'm also going to start taking a vitamin D supplement; I recently had a vitamin D test and I came out as being deficient (a result which didn't surprise me). I would be taking vitamin D for bone health rather than eye health, but you never know: it might help the eyes in some way. I'll look into vitamin C too. I'm glad your chiropractor has helped you, but that's something I'll have to give a miss: I can't afford one.
Posted 4/10/2017 7:36 PM (GMT 0)
NCOT,

Make sure to use drops regularly if yo want to use them. Even if it is a liquid solution it can bring side-effects since it is a steroid. If you decide not to use them then taper down slowly. But again this is something that I did at my own risk since I was afraid of side effects. I relly think I developed floaters because of drops. The doctor at Henry Ford was wonderful but she doesn't know what exactly happened. She said it is not from my eye and is most likely from gut inflammation. I was in similar situation with money. Drops are very expensive and after month and a half, I decided to slow down drops and to add intensive chiropractic care. Of course, I understand you. I was scared to not take drops but I felt little better after adjustments so I choose this way. On the last exam, my vision was great, except the floaters. I also have to go to the hospital once again and check my eye, but cannot afford it right now. I live in Canada close to the border, have insurance but it is still expensive.
Yes, I agree. Vitamin D is crucial. If you can eat some fish, wild salmon or something like that that would be great.

I really hope drops will help you. Wish you luck with Entyvio. Will pray for that.
Posted 4/11/2017 1:35 AM (GMT 0)
@NCOT I'm so sorry you are dealing with all of the family drama on top of everything. It is really soul sucking to have to deal with difficult relationships when you are not physically feeling well and just contributes to feeling bad. I hope the Uveitis calms down with the drops. I've been kinda down in the dumps lately so not up for writing a long post right now though I have a quite a bit I'd like to say but lots of hugs to you and hope you see some improvement soon! My doctor said if i get one more infection like the back to back ones I've been getting, I need to move on from the remicade to entyvio and its unsettling the amount of uncertainty that goes along with it.

Post Edited (Labradorite) : 5/1/2017 8:32:22 PM (GMT-6)

Posted 4/11/2017 2:07 AM (GMT 0)
I want to see everyone's art! Now I want one!!!
Posted 4/11/2017 11:02 AM (GMT 0)
Wow. So bowel art is actually a thing? Who knew? :v

@owleyes - Yeah, I'm scared of side-effects to my eyes if I keep on taking the drops for too long. That said, I'm not sure the drops are even working this time. I had uveitis twice in the right eye and both times the drops cleared it up after just a couple of applications. I now have it in the left eye and the drops don't seem to be boshing it on the head. As for price, I'm fortunate enough to get all my medication for free (I'm in the UK), so paying for the drops isn't an issue. But I'm on a low income, so I can't really afford to go down the alternative medicine path either. I also don't really believe 99% of the stuff works, but on the other hand if money was no object, I would probably give it a go 'cos why not.

At any rate, thank you and I'm glad you found another way of managing your uveitis. Anything to do with sight is a bit scary, 'cos of the potential for vision loss :/

@Labradorite - Any chance I can see a picture of your intestines? <_<.

At any rate, I'm not surprised you're feeling low from everything you've been through recently. I think if you keep on getting infections then moving to a less systemic biologic makes sense. Hopefully you won't get any more though.

I'm off to the hospital for my Entyvio infusion now, folks.
Posted 4/12/2017 1:06 AM (GMT 0)
Lab,, those are amazing!
Posted 4/12/2017 1:29 AM (GMT 0)
Thanks! If you ever want me to do a portrait of your intestines let me know, I'm running out of open source images to work from, haha.
Posted 4/12/2017 1:32 AM (GMT 0)
Haha, I will definitely let you know! smile I was telling my husband I actually really want to do something like that and have it hung or something, only I have zero artistic skills. And I mean zero. I taught middle school math, and my students would just make fun of me when I would try to draw shapes and story problems on the board.
Posted 4/12/2017 2:59 AM (GMT 0)
someday ill get someone to take a shot and try and get it online.. ;oP

lab, kinda same image but just in color . like a colonic tornado!
Posted 4/12/2017 11:17 AM (GMT 0)
Hi folks.

My infusion went fine. However my left eye is still hurting and looking red at the bottom. By pure coincidence my GP phoned this morning (I think it was to tell me about my pillcam report, but been there, done that, worn the t-shirt doc), so I was able to talk to her about my eye. She's sent a letter to the eye casualty department, so hopefully I'll be hearing from them soon.

@Lab - You've got skills! I'll be happy to take photos of my pillcam pictures and upload them for you to use, if you like - heck, you can even credit them as belonging to me if you want ;p I know what you mean about being too embarrassed to ask for medical images. I wanted an image of my dissected colon at one point - just to see what it looked like really. But in the end I couldn't get over my embarrassment and so I still don't know what it looked like.
Posted 4/13/2017 5:57 PM (GMT 0)
Ha! I'd love that! I would even send you a completed one in return if you'd like!

As long as I'm confident in my doctors I'm mentally able to be curious about these things rather than completely scared out of my wits. Id have felt the same way about the dissected colon. My view is, i might as well get something out of this crapty disease, if it can inspire some decent art work, it won't undo all of the misery but will at least make me chuckle a bit and maybe inspire some other people too.
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