Where is Minnietoty, UB Tough, NCOT?

Hey all,

I am still lurking and reading. I hope everyone is hanging in there! I noticed that Minnie, UB and NCOT have not checked in lately. Wondering if anyone has heard from them?

I have found myself remembering the days when we were all chatting back and forth. I miss those days. I remember when I was first diagnosed I would read the posts and think Oh Gosh I hope I don't have to go thru that...and then later I would travel down that road. So many people helped save my sanity.

Thank you all for taking the time to share your stories, your knowledge and your wisdom.

Stay safe all!
Clo

Post Edited (clo2014) : 3/2/2021 12:28:51 PM (GMT-7)

Hey Clo!
What a nice surprise hearing from you! I've been off living life in wonderful remission I have fistula issues on a rare occasion (like now) but I've been using WOO and Healing Bottoms turmeric suppositories and that cleared up a minor abscess last year. No stupid I & D necessary. Hoping the same will happen this time. I gave up on fighting for a fistula repair until after Covid and I can travel to the US to get it fixed there. But honestly, blessed remission after 30 years of hell means I'm allowed to stop fighting. I haven't even seen my GI in more than a year.
I've been spending my time advocating for disability rights - and MAID. Things here are deplorable. So many human rights violations in Canada.
I'm torn about the vaccine - not against it but am very nervous about the severe adverse effects and potential for death that I'm going to wait as long as possible. My lifestyle makes waiting possible. I simply don't want to take the chance that anything could mess up remission.
Remind me; was it you don't the stem cell for fistula repairs? I haven't kept up with the latest but figured with covid research, clinical studies are on hold. How are you doing?

UB,
Sorry for delay. Have been posting on UC forum. I guess that's one thing about being blessed with both.

Yea on your remission! I am so pleased for you! I am so glad that you can get out and do things!

I have been sorta ok.....muddling along....until my kidneys started having issues. Crossing my fingers and toes that it gets better. (Although they think it's the Remicade and methotrexate causing it. )

Clo

Hi Clo, funny, how this page just popped out of now where when I wasn't expecting? I hope you're all well, considering? I'm still here, but quit coming to the board quite some time ago because hardly anyone is here anymore? I miss this board and all you regulars. I've could have used the support so many times, but internally grateful to the few responses I did get?.

With the crohn's, I can't even say how I feel right now? Came out of remission and went through a real tough time. I'm on Entyvio now. They say my inflammation markers are down but it doesn't feel like it. (I'm around borderline now) Still running 8-10xs a day, my weight is rock bottom and lingers around 65. and I just can't bring it up to the normal? Doctor has me on 3 imodium per day continuously? And that is the story of my life>. How are you all doing, any success stories?

Post Edited (dorri) : 8/25/2021 7:54:29 AM (GMT-6)

Hi everyone!! I saw this thread and it made me sooo happy!!! I don't want anyone to be ill but it's wonderful to talk to you all. Crohn's and UC are such hellish diseases and everyone needs as much support as possible.

Scifi,
I love hearing from you! I think of you often and hope that you are doing well.

UB,
I read the other threads. I thought you were in remission...or maybe you are in remission and just wanting the TIES? If so may I ask why? I imagined you going to dance class and enjoying your life. TIES was around when I was first diagnosed. Some if their responses had me confused and alittle concerned. With Crohn's disease...it can always come back someplace else. (I have had 3 colostomy operations since 2016) so please continue to research and share. My colorectal surgeon told me that when you go off medication with Crohn's you usually start relapsing after 6 months and the if you have surgery and you have had fistulas or PG you can have those things happen again. He gave the percentages and honestly...it scared me....but 2 were obstruction surgeries and the last one was because of infections. So please be careful.

NCOT,
I am sorry you have been struggling. An ileostomy? How much do you have left? The frequent bathroom trips do wear you out. You never feel rested. I still have a colostomy. Once they removed it I never looked back. It's so much easier with an ostomy. I have had 2 obstructions but the ostomy has been a game changer for me. I don't have to look for the nearest bathroom or plan my trips like I used to. I don't have to worry about night time accidents. I am thankful for my ostomy. It saved my life and gave me a better quality of life. I hope you feel the same way.

I am still on Remicade but my kidneys and Egfr keeps going down to the acute renal failure stage after my infusion and then rebounding to 60. This last time it rebounded all the way up to 73. But to get it to do that I have to drink almost a gallon of water a day. I slosh when I walk! Lol... My last surgery...April 15th 2021...was awful. They removed almost all the remaining "left behind" rectum that was attached to the anus, scraped the anus and did nothing to the RVF. They were hoping it would stop producing mucus. (The mucus was so frequent and so much that it was causing bladder/kidney infections...hence the surgery.) I haven't had an infection since, the fistula is still producing some mucus but it's alittle better....but my darn kidneys started acting up after surgery. OMG....the hospital stay....awful...Covid made it so that they did not want to come in to give you pain meds. They would set the pills just inside the door and I had to get them. They stopped the iv meds in the recovery room and only used 2 bags of saline after that....then the day after surgery they removed the IV completely. Same with water and food....left by the door. If they could have sling shotted it in to me I think they would have. They had me hooked up to heart and oxygen machines with enough wire so I could get to the bathroom and pick up the stuff they left by the door. I had surgery on Thursday night and they released me on Sunday morning at 6 am. No one was allowed in with me. The nurses used the intercom and only came in all the way if they had to. Wow!! Talk about pulling on your big girl panties.lol... One week after I got home I sat up in a chair and the outer layers if skin down my incision split open. Blood everywhere... But it stopped bleeding within a couple if hours so they told me to stay home and let it heal from the inside out. It scared me. It didn't hurt as bad as the PG..(the incision was in the same area where I had PG previously).but for some reason it scared me more. It finally closed up this month. Covid completely changed the way the hospital treated their patients...but I don't blame them. They don't want to get sick.

Dorrie,
It's so nice to hear from you! How long have you been on Entyvio? What's your GI saying? You are right about not coming on because you don't see alot of old timers on here. That's part of the reason I stopped posting too.

73monte,
I see you around still. I look for you on here. You ask such good questions...things that I sometimes forget to ask.

As far as the vaccine.... I was trying to run to the front if the line so I could get it before my surgery. (I did) went thru surgery...had kidney issues and my PCP did a bunch of tests. One was to measure my antibody levels...it came back at 0. Nada...nothing! I am going in for the booster in 6 weeks and trying something other than Pfizer. Lol.

I am so grateful and glad to see you all! Let's try to keep this thread up and active. See if some if our other old friends will chime in. It would be wonderful to hear from them.

Talk to you soon I hope!
Clo

Sorry, what is TIES in relation to Crohn's? Google is letting me down here.... >.>

@Clo - I've got my rectum and about half my sigmoid colon left - the rest of my colon has gone. My small bowel is connected to my rectum. I didn't have fistulising disease, so I took a chance on a reversal but it never really worked well - from the start I had severe urgency, tenesmus and butt burn, which made toilet trips a misery. Still, I managed for a few years, but started getting more and more sick of it. And now I've got fun new upper GI issues to add to the mix! Have always had occasional issues with heartburn and nausea, but that's been slowly getting worse too. Then last week was REALLY bad - one night I got no sleep at all for nausea and chest pain. It's been better the last two nights, but I'm still scared as to what it might be. Probably just severe indigestion, but why now, when my diet hasn't changed...

I am sorry about your kidneys. That sounds scary and I hope they can find a solution to it. Your hospital stay sounded grim as well I get that the nurses are scared of getting Covid, but there must surely be some middle ground between protecting the staff and treating the patient like they have the Black Death. I'm not sure what UK hospitals are like, but my mum's friend recently had an operation for lung cancer. She wasn't allowed visitors, but I don't think the nurses avoided her like the... plague. She made a point of saying how nice they were all and how well they treated her, so there must have been some communication there.

Anyway, when I have surgery I'll be getting my butt sewn up. It's a big step but I know I'll never try for a reversal again. And last time I had an ileostomy, I actually ended up passing mucus several times a day - so just keeping an disused rectum in there indefinitely isn't really an option.

Do you mind if I ask why you've still got your anus? Are you hoping for a reversal one day?

@UB - Urgh, that sounds horrific. I honestly thought Canada would treat its disabled people better than that: it sounds no better than the UK. I'm too tired go into details right now, but my disability benefit is up for review. Which means going through the whole assessment again. I've at least done the first part - filled in the form - but now I'm waiting on the second and worse part: an interview. I'm just so sick and tired of being assessed every 1-2 years. Even if you get awarded disability for, say, 2 years, they can cut it short and haul you up for another assessment before the two years is up. (Yes, that happened to me.)

I've thought about trying to find work I can do from home, but I just feel like a rabbit trapped in headlights or a lab rat stuck in a cage - helpless. Just don't even know where to begin after so long out of work...

Anyway, sorry, I'm getting a bit depressing. Just very tired at the moment :-/

I'm sorry about your dog, UB. In time maybe you'll be able to consider getting another dog, but 15 years is a long time. I'm sure you must still miss her incredibly.

Glad to hear you had your shots. I had a horrendous night after the first dose - fever, chills, pain, etc. But I was fine 24 hours later, and had no reaction at all to the second dose. Not heard anything about boosters, but I think there's a fairly decent chance I had Covid in early summer. Well, it was that or the cold from Hell. Only thing which makes me lean towards Covid is that I lost my sense of taste and smell for a week. It fortunately came back, but I've never had that with a cold before.

clo2014 said...
Hi everyone!! I saw this thread and it made me sooo happy!!! I don't want anyone to be ill but it's wonderful to talk to you all. Crohn's and UC are such hellish diseases and everyone needs as much support as possible.

Scifi,
I love hearing from you! I think of you often and hope that you are doing well.

UB,
I read the other threads. I thought you were in remission...or maybe you are in remission and just wanting the TIES? If so may I ask why? I imagined you going to dance class and enjoying your life. TIES was around when I was first diagnosed. Some if their responses had me confused and alittle concerned. With Crohn's disease...it can always come back someplace else. (I have had 3 colostomy operations since 2016) so please continue to research and share. My colorectal surgeon told me that when you go off medication with Crohn's you usually start relapsing after 6 months and the if you have surgery and you have had fistulas or PG you can have those things happen again. He gave the percentages and honestly...it scared me....but 2 were obstruction surgeries and the last one was because of infections. So please be careful.

NCOT,
I am sorry you have been struggling. An ileostomy? How much do you have left? The frequent bathroom trips do wear you out. You never feel rested. I still have a colostomy. Once they removed it I never looked back. It's so much easier with an ostomy. I have had 2 obstructions but the ostomy has been a game changer for me. I don't have to look for the nearest bathroom or plan my trips like I used to. I don't have to worry about night time accidents. I am thankful for my ostomy. It saved my life and gave me a better quality of life. I hope you feel the same way.

I am still on Remicade but my kidneys and Egfr keeps going down to the acute renal failure stage after my infusion and then rebounding to 60. This last time it rebounded all the way up to 73. But to get it to do that I have to drink almost a gallon of water a day. I slosh when I walk! Lol... My last surgery...April 15th 2021...was awful. They removed almost all the remaining "left behind" rectum that was attached to the anus, scraped the anus and did nothing to the RVF. They were hoping it would stop producing mucus. (The mucus was so frequent and so much that it was causing bladder/kidney infections...hence the surgery.) I haven't had an infection since, the fistula is still producing some mucus but it's alittle better....but my darn kidneys started acting up after surgery. OMG....the hospital stay....awful...Covid made it so that they did not want to come in to give you pain meds. They would set the pills just inside the door and I had to get them. They stopped the iv meds in the recovery room and only used 2 bags of saline after that....then the day after surgery they removed the IV completely. Same with water and food....left by the door. If they could have sling shotted it in to me I think they would have. They had me hooked up to heart and oxygen machines with enough wire so I could get to the bathroom and pick up the stuff they left by the door. I had surgery on Thursday night and they released me on Sunday morning at 6 am. No one was allowed in with me. The nurses used the intercom and only came in all the way if they had to. Wow!! Talk about pulling on your big girl panties.lol... One week after I got home I sat up in a chair and the outer layers if skin down my incision split open. Blood everywhere... But it stopped bleeding within a couple if hours so they told me to stay home and let it heal from the inside out. It scared me. It didn't hurt as bad as the PG..(the incision was in the same area where I had PG previously).but for some reason it scared me more. It finally closed up this month. Covid completely changed the way the hospital treated their patients...but I don't blame them. They don't want to get sick.

Dorrie,
It's so nice to hear from you! How long have you been on Entyvio? What's your GI saying? You are right about not coming on because you don't see alot of old timers on here. That's part of the reason I stopped posting too.

73monte,
I see you around still. I look for you on here. You ask such good questions...things that I sometimes forget to ask.

As far as the vaccine.... I was trying to run to the front if the line so I could get it before my surgery. (I did) went thru surgery...had kidney issues and my PCP did a bunch of tests. One was to measure my antibody levels...it came back at 0. Nada...nothing! I am going in for the booster in 6 weeks and trying something other than Pfizer. Lol.

I am so grateful and glad to see you all! Let's try to keep this thread up and active. See if some if our other old friends will chime in. It would be wonderful to hear from them.

Talk to you soon I hope!
Clo

@Clo,

Very nice post. Thanks for the honorable mention. So nice to see you posting hear, along with the others mentioned.

NCOT - Clo must have dragged up an old post of mine. TIES replaces the need for a conventional stoma so there's no need for a conventional bag always attached to you. I've been following the technology for years and my GI is also very interested. It may be a solution if I ever need it. Anyway, the patient is fitted with a titanium port below the skin and it is covered by a screw on lid. The lid is completely sealed so there are no leaks. When it's time to evacuate - unscrew the lid, attach a bag, empty and dispose, screw lid back on and away you go. They are doing clinical studies (phase 3 I think) in Europe.

Find out more at www.ostomycure.com

Re:jobs...it's been a process. Realizing that my actual career is over - the focus just simply became "make $$$ while I can." Which unfortunately means pretty menial jobs - and trying to figure out how to secure an income with ongoing treatments, side effects, large gaps in my resume and of course answering "why is someone with your education and skill set not working in your profession anymore." Like I said, it's a process. I know I can't work full time but a simple no stress part time job works. covid means working from home too- think customer service online.

Re: disability - our system is awful. Human Rights violations. So this is where I use my "brain and education" - doing this type of advocacy. Covid has blown open the ga.p between have and have nots...Homeless are not just limited to a section of town - but are all over. You can't go through a major intersection without panhandlers. I do a lot of fundraising and legal work in the field. Our covid relief or CERB - was supposed to go to the most vulnerable but it didn't. Over 4 million PWD's did not receive a cent and live 42% below poverty. We have an opportunity for real change in our upcoming election - progress with universal pharmacare and income - but it won't happen. "Trumpian" intolerance has gripped our country too and it's not good. Not only do our applications get frequently reviewed- we are subject to random housecalls-- meaning a "worker" can check to see what things you have in your house - like if someone donates a TV....I could go on with the stories....these are everyday ppl like you and me....didn't ask to be sick but shouldn't pay the price of deep poverty for being diseased. UGH.

Dog: I miss her terribly. When you've been sick as long as I have you don't have friends. She was my best friend. I cry everyday. I don't think I'll get another though....my hospitalizations are long and my disease too severe. I don't have anyone to look after a new pup for weeks or months. And I'm aging....will I live another 15 yrs? Not that I'm THAT old but you know. My biggest fear was I'd get covid and my old deaf pup would end up in a shelter. I'm glad remission allowed for amazing walks and hikes with her and I was physically able to take care of her as she declined over the last 6 months. The last 4 days was literal round the clock hospice in my home....

Keep me in the loop about surgery. I think I have your email address. Will send you a message there if I do. Take care. BTW have you ever tried nortriptyline?? That really put me into solid remission...i've read several posts from ppl who say it's helped even IBS..

@Dorri - Thank you, that's a very kind and thoughtful thing to do. I didn't know you had been through such a horrendous time. I'm sorry the ileostomy didn't work out, but I'm very glad you survived your last surgery. Incidentally, I went back to my gardening place last week after 18 months of it being closed due to the pandemic and saw a real life pond there. It's become very overgrown now, although in a good rather than bad way - it's just got loads of tall reeds that didn't used to be there. Ducks and moorhens have moved in. It's hard to believe that the pond is man-made and was only created about 6 years ago. I think my brother would have liked it.

PS: Is trying Stelara a possibility? That said, I think long term Crohn's often comes with a crap load of side-effects that biologics don't seem to touch - it did for me. Some of it might just be down to getting older, but I'm still only 46 so I'm more inclined to put it down to autoimmune wonkiness than old age. I never really considered the possibility that it might also be the biologics. Think it's fairly unlikely in my case as similar symptoms are always there whether I'm on a biologic or not.

@UB - Ah, I thought TIES rang a bell! But when I tried googling TIES and Crohn's, nothing came up. Thank you for the link, I do remember that website. I even mentioned it to my surgeon, but she just basically said she would never consider putting a foreign object inside a Crohn's patient. And that was the end of that discussion.
I've just taken a look at the website and I must admit, I'm still confused as to where the stool is actually stored without a bag. Does it just sit in your small bowel until you are ready to empty it? As a Crohn's patient, I don't fancy that idea myself. They have a contact form, so I might use it to ask them...

Hope this doesn't sound patronising, but I admire what you are doing. Thank you for trying to help people even worse off than yourself. You are a good person and if more were like you, we would have far less poverty and suffering. Nobody wants to be sick, disabled or mentally ill, but sometimes life forces us into these positions. I feel very strongly that nobody in a civilised society should be homeless or hungry. Nobody. I don't care if you are a drug addict, or whatever - you still deserve a roof over your head.

I understand your reservations about getting another dog. I actually sought permission from my housing association to have a dog and they agreed. That was 3 years ago, and I still haven't got a dog. I'm just too worried that I won't be able to walk it during bouts of depression or illness. I am sorta reconsidering the idea again with a naturally low energy dog like a chihuahua... (They have bad reputations, but the couple of chihuahuas that I've known have been lovely.) Anyway, I am sorry about your dog, but I am glad she never had to go into a shelter and that she got to see out her last days at home with you.

PS: Not tried nortriptyline (I don't think - have been on so much stuff...), but have tried a similar med called amitriptyline. Don't remember it doing much for me other than making me feel groggy, but it is a known IBS treatment and may well help somebody with IBD who has IBS-like symptoms, especially in remission. Unfortunately I seem to be largely immune to all stuff which is meant to slow or calm down the bowels - codeine, imodium, etc.

My email handle hasn't changed. The only thing that might be different is I switched to gmail as my main email account a few years ago. But I still receive, and see, Yahoo mails as well.

@Clo - Holy crap, I know exactly what you mean. The list of stuff I haven't dealt with seems to get smaller with every passing year, whilst the list of stuff I *have* dealt with gets larger. I think probably one day there will be a cure for Crohn's, but I don't think it will be in my lifetime. Crohn's starts with faulty genes, so that's where I think the cure will lie - environmental stuff like the microbiome just so much tinkering around and may lead to new treatments but probably not cures. But don't mind me: I'm not an expert, I just like to pretend I'm one <_<.

Hey Clo. Congratulations! :p I hope the good results continue. And yeah, smoothies should be safe, at least from an obstruction point of view (I don't know about kidneys). I got a good quality blender last year for making soup and it really does get it silky smooth. Also tastes a lot better than anything you can get from a supermarket in my opinion.

I'm currently trying to chase up an appointment with my opthalmologist, as my eye medication, Maxidex, has been out of stock for 3-4 months. Had a small stockpile so I've been using that up, but this is something I need to sort out sooner rather than later. The whole supply situation in general is really starting to worry me. The whole of England has cancelled non-urgent blood tests because of a shortage of sample bottles. Wanted to get an iron test, but I dunno if that will be possible for now.

Speaking of iron, I think I'm anaemic again. Took an iron spray for a while which seemed to make a positive difference. I took it for a few weeks without any issues - it's a sublingual spray so it should, in theory, bypass your GI tract completely. (In reality though, it's hard to avoid swallowing at least a bit of it.) But then I started developing stomach pains and nausea, which got worse and worse. I will try it one more time, but I'm not very hopeful. It's frustrating as hell, because I thought I had finally found an iron supplement I could tolerate - apparently not. And today I really struggled with playing tennis (I'm getting a free tennis lesson on Mondays, which is nice >_>.) Had to take several breaks I was so out of breath. Yeah, I'm unfit but not THAT unfit.

I don't even know where I'm losing iron. I don't have small bowel disease - or at least I didn't in my last small bowel MRI. My periods are light. I'm not a vegetarian/vegan. There's no blood in my stool. Thinking of asking to be referred to a haematologist because I'm getting sick and tired of this and maybe they can find out what's wrong.

Clo - Yeah, uveitis meds. I've tried many times to stop Maxidex but every time it creeps back, so now I just take a couple of drops every 2-3 days and that is enough to keep it at bay. I don't blame you for being scared of running out! The prospect of a no deal Brexit made me terrified of not being able to get food or medication. (To put that fear into context, the UK imports 40% of its food and 75% of its medication from the EU.) We did get a deal in the end - a bad one but still better than crashing out with no deal whatsoever - and we're still bloody struggling to get stuff into the country.

Iron transfusions fix me for a while, but the problem is the iron always runs out again and then I'm back to square one. Would like a more permanent solution if possible, but suspect it probably isn't. Oh, and I forgot to mention another fun symptom of iron deficiency: restless legs. Just what I need, another thing to keep me awake and/or get me up at night. Sorry if I'm sounding cranky. I'm just not sleeping well at the moment. Was up at least 3x last night to go the toilet and one time because of restless legs.

Have you had your Covid vaccines yet? I had mine ages ago (Astra Zeneca). I think it's possible I had Covid in June. If so, god knows what it would have been like without vaccination because I was really ill for a week and it took me at least 3 weeks to fully get over. But what made me suspect Covid was that I lost my sense of taste and smell for a week. I'll never know now, but if it was Covid at least I should have developed additional antibodies to it.

Yeah, they do telehealth here. I've had a couple of online appointments with my hospital already and, I have to say, I don't like it. Just find it so awkward and the appointments are far shorter than they would be face to face. I mean, during the peak of the pandemic I didn't complain obviously, but I hope it's not going to become a permanent thing. (Also would like to add I have no issues with wearing a mask or using hand sanitiser.)

Good luck with your infusion. If you can, sit by an open window. That might well not be possible, but ventilation and mask wearing is your best protection indoors. PS: your infusion centre is 90 miles away?? Holy crap, in the UK we rarely travel more than 10 miles for medical treatment anywhere. We're a bit weird about distances here: I go to a hospital in another county for my Crohn's. It's still only about 15 miles from me, but sometimes nurses have told me that's a long way to come.

Anyway, my parents are coming over a bit later. My mum is going to go with me to the local Skoda dealership because I'm too socially anxious to go alone >_>. Basically I have a 20 year old Skoda Fabia and while it's been a great car, it's on its way out, much like its owner. Suspect dealership cars will be too expensive even second hand, but still might as well check it out. There's a bit of time pressure because I'd like to get a new car before my road tax is due on the 31st October.

NiceCupofTea

I'm anemic even though I've been on iron supplements. I had a colonoscopy and endoscopy to rule out GI bleeds, and they were negative. My doctor is thinking that for some reason my body doesn't absorb iron properly. My next step is the iron infusion.

Sharon

Hi All,
It’s good to see some familiar faces! I haven’t been here in a while. How are you all holding up?
After about 4 years of remission, unfortunately my last routine scope showed active disease again so it’s back to figuring out next steps. I actually thought it was going to come back fine and scheduled it right before my birthday cause I could really stand some good news after a terrible year but I was unfortunately mistaken. Could be worse though and thankful I caught it now rather than later.
Would love to hear from you all, what have you been up to and how are things going?