I'm absolutely tired of this

New Topic Post Reply Printable Version
58 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 993
   Posted 8/11/2017 4:03 PM (GMT -7)   
I'm so sorry NCOT, Sending much love and hugs to you and everyone that is going through very difficult times right now.
(Clo, I have to say, I read your words yesterday and it made such a big difference! I really want to frame that so I can read every time I get overwhelmed!)
I understand, though I have been fortunate to obtain a decent remission right now how ever long it lasts but putting my life back together after basically ten years of battling this with few breaks has become a monumental task that has drained the energy I wish I could enjoy along with still dealing with continued health problems. ... well, I ended up getting into a really long rant about my problems so I'm going to stop before I hijack your post!

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10085
   Posted 8/11/2017 4:09 PM (GMT -7)   
Paul - I believe you. The possibiilty remains that it's just coincidence - or maybe the herbs really have something in them which helps. I dunno. But I do believe you.

Deb - I'm sorry it's so bad for you. I know you said you quit taking maintenance meds, but have you tried any meds for the diarrhoea? Questran is meant to help diarrhoea that's caused by bile acid malabsorption (I ought to try it myself but haven't done... If ever I see my GI again I'll ask him about it). Or there's loperamide or, somewhat more problematically, codeine. My apologies if you've tried all this and none of it makes any difference. A lot of the time it doesn't: Imodium doesn't do anything for me, for example. But they do help some people and it's pretty safe to take Imodium long turn if you don't have active disease.

It's like people who get a cold and then spend 15 minutes moaning about it to whoever will listen. Dear god, it's a cold. The worst of it will be over in 2-3 days. These are invariably the same people who never ask me about my Crohn's or ask me how I'm doing (or if they do ask me how I'm doing, expect a quick "fine" and nothing else).

Edit: Thanks Lab! Just seen your post and will read it now.

Well it sounds like you're free of Crohn's for the time-being but dealing with other health issues (possibly caused indirectly by either the Crohn's itself or the meds you take for Crohn's). That's no fun either. And what you said about putting your life back together really resonated with me. Over the last two years that's what I've been trying to do. I've got my own place, I've got a voluntary job, have just joined a gym. I've repaired my previously broken down relationship with my parents. And I still feel like Sisyphus, rolling a boulder up a hill and never getting it to the top before it rolls down again. I can't even contemplate dating and even in the incredibly unlikely event I met anybody, it would be too late for me to have children now.

I would have struggled with life even without the Crohn's. I had depression and anxiety and - as it eventually turned out - autism. Then add to that a disease which just basically knocked me out of the running for several years. It was debilitating and it still is.

Post Edited (NiceCupOfTea) : 8/11/2017 5:19:03 PM (GMT-6)


Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 8/11/2017 6:40 PM (GMT -7)   
You know my story NCOT--you've been a valuable source of support to me and for that I am grateful. You are not alone, not at all. *hugs*
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 315
   Posted 8/11/2017 7:33 PM (GMT -7)   
NCOT: It is not a coincidence, because after I took the medicine, I felt better, a lot better. I still run into symptoms these days, but I am not miserable. I feel to live a happy life, you need 3 things in life (1) education and vast amount of knowledge. I am not in medical field, but I studies both Western medicine and Chinese medicine by myself; (2) strong financial resources; (3) friendship and support from family and friends. After all, rich people do live longer, don't they?

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10085
   Posted 8/12/2017 4:18 AM (GMT -7)   
Plucky - Thanks! Hugs back to you.

Paul - Rich people definitely live longer. That's because they can afford decent healthcare, decent housing, decent food, decent holidays, etc. - I'm sure you get my drift. Friendship and family are highly important too, don't get me wrong. But money does make everything easier and more comfortable.

You were also lucky, Crohn's-wise. I mean that relatively; you're not as lucky as somebody who never got Crohn's and has no other health conditions. But you're lucky in that it seems to have had a very minor impact on your life so far. My brother is in a similar position to you, minus the Chinese medicine >_>. He's had Crohn's for almost 20 years but flare-ups are few and far between and quickly boshed on the head with steroids. He's not rich (much as he would like to be), but he's been able to work full-time, take his kids to various places, go on holidays, etc. - I think the job exhausts him far more than the Crohn's does, although admittedly I'm guessing at that.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 432
   Posted 8/12/2017 8:22 AM (GMT -7)   
NCOT, I have had this disease since I was a kid and the plan was to enjoy my life and then check myself out whenever I felt like I had had enough.
Seriously.
I lived with a very short term mentality throughout my 20s and early 30s.
Therefore, I'll never begrudge another person for wanting to make a similar choice.
But then I had kids and everything changed for me. One was a surprise and the other was planned. Either way, I chose to have them. It was my decision.
And so I have taken suicide off the table. I made the choice to live for them and fight to stay here for as long as possible, and that's part of the reason why I'm finally having fistula surgery next week...
That's what living is. A choice.
And we all have to make that choice every day.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15406
   Posted 8/14/2017 10:19 AM (GMT -7)   
It's hard. A lot of people with UC are adamantly against surgery, and while the statistics may show positive results being common, I have a friend who had surgery and she struggles a lot still. Between blockages, kinks, adhesions, and leaking at night... she sleeps in diapers and only eats in the evening. It's not easy to face that surgery may not be the end of the nightmare. For me, I am very thankful surgery has put an end to the misery, but I am scared that there is no guarantee of being well forever. You never know what the future holds. There may be an option that comes along for you, that puts your inflammation at bay for the rest of your life. I hope so. To be honest, I would have waited for the drug that gave me 1x a day over going more often with a pouch, but waiting wasn't an option without high doses of steroids, and that to me is the worse, much worse than what I've got at the moment. Life with a j-pouch isn't all rosy. It's better than life with uncontrolled UC, but a normal person would be in shock if they woke up one day with a j-pouch. Even people with mild IBD would likely be very unhappy going as much as j-pouchers do. "chronic up to the point of surgery" is definitely an understatement. Surgery isn't one and done. People suffer with a variety of potential areas of inflammation, going often, all sorts of butt burn and anal issues, loose stools... none of that's going away... Besides the point that we are all predisposed to a host of other AI illnesses. I have fatigue that makes me barely able to function, and I go to the bathroom a lot. Good stuff. Have you tried taking VSL#3 regularly? Maybe it would help you...
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 716
   Posted 8/14/2017 1:25 PM (GMT -7)   
NCOT,

Just checking on you.

Hope things are looking better for you.

Hang in there NCOT....
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

aimz
Regular Member


Date Joined Feb 2013
Total Posts : 152
   Posted 8/15/2017 2:15 AM (GMT -7)   
Hi NCOT,

Just wanted to say that I feel your pain and frustration - and (as you can see from this thread) you are not alone.

**Hugs**
32y/o female
May 2016 DX changed to Crohn's Disease

Symptoms 11 yrs, Dx Jan 2014 UC 15cm, extended to 21cm Feb 2016, 40cm April 2016

Four tapered course of Prednisolone (Sept 14, Aug 15, Nov 15, April 16).
Currently using:

Infliximab Infusions 8-weekly

Hospitalised 1wk April 16
Acidophilus 20billion - 1 capsule daily

Fistulectomy Jan13

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10085
   Posted 8/15/2017 4:15 PM (GMT -7)   
Hi folks.

Well, Monday was hideous and I don't want to talk about it, other than to mention I had the worst nosebleed I'd ever had - I'd never seen so much blood before. Today I've just mainly been bone tired but I'll take that over meltdowns and tears.

@gypsyfp - Having children won't be my saviour, as, at 42 years old, I'm already at the point where I'm virtually too old to have them naturally. Plus I'm not in a relationship nor is there the faintest prospect of my being in a relationship on the horizon.

@nssg - Holy crap, that's a bad outcome for your friend. How long ago was her surgery? Has she been tested for Crohn's? I do hope things get better for her. Anyway, I was like you: I wasn't in a position to wait around for new treatments. I was steroid dependent and stuck on a high dose of pred by the end. Without pred I was back in the hospital: it was a vicious circle I couldn't break out of in the 18 months before I had surgery. I feel like life was much easier for me in the early days when I had mild Crohn's (or at least mild symptoms). Surgery saved me from dying from toxic megacolon, or whatever, but I still have all the issues that you mentioned.

@Clo - I'm still here :-/

@aimz - Thank you! Hugs back...
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15406
   Posted 8/15/2017 7:32 PM (GMT -7)   
She finished the surgeries a few months behind me, but her recoveries where riddled with complications. Then she had a blockage while traveling and had to have surgery with a surgeon that wasn't familiar with her situation. She's probably had her pouch for 1.5 years at this point. I think her pathology from surgery came back as UC, and all past testing concluded UC, and i don't think her pouch has ever had inflammation. I don't know why she's had so much trouble. Perhaps there's something else going on. I know she had trouble with adhesions throughout. She had to have unexpected open surgery due to adhesions. She's considered going back to an ileo. She was doing well with her's, but now she's worked so hard to get the pouch, I think she feels like she should give it every possible shot. I know i'd likely do the same, but yeah, no shame in doing what's best for you!

I was the same way you describe, on pred, or refusing pred and dwindling away to skin and bones from not eating. I miss the days of 1x and normalcy & a good night's sleep, but that wasn't in the cards for me. Keep your chin up. A lot of what you're saying sounds like depression. Are you seeing anyone? I know it's hard to not be depressed when you're suffering with physical impairments.. sometimes I felt like it was a chicken egg situation. Actually, I still feel depressed often. I was depressed before my health sucked and I am depressed after. I have always been very down & negative. How can support be withdrawn in a country where healthcare is free? What are you going to do? Don't give up. You will find something that helps you. I don't want to sound like broken record, but what about eating bulking foods, like high fiber diet? How about flagyl? Have you tried any antibiotics? VSL#3? I know the 5ASAs aren't your friend, what about steroid enemas? or uceris foam? My proctitis never responded to anything, so I know how persistent it can be, and how debilitating. I would like to hope that since you're not dealing with a whole colon, you can get it under control. how about doing a fecal transplant with an enema??!!??!!
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Post Edited (notsosicklygirl) : 8/15/2017 8:35:14 PM (GMT-6)


ragbag
Regular Member


Date Joined Sep 2003
Total Posts : 120
   Posted 8/15/2017 8:10 PM (GMT -7)   
I was diagnosed with crohns 20 years ago, but had symptoms for twice that long.
It certainly can wreak havoc with our bodies physically and mentally, and I have always come away from reading this board with knowledge and an appreciation for all of the members who share their experiences and struggles, and I hope everyone finds comfort and hope when dealing with all that goes along with crohns or any disease when it seems to be especially difficult.
When reading about gumbys flashing lights in her vision, this began happening to me about four years ago. Very scary, and my eye dr. Thought it may be a symptom of a migraine. My regular doctor ordered an MRI to rule out any brain abnormalities. I was diagnosed with migraines. I only have gotten them maybe a few times a year, with bright flashing strobe like lights coming first. I take a medication called sumatriptan when I experience these flashing lights and then i lay down if possible to let it work. The worst one actually happened while I was driving. Afterwards I have a headache that may last a few hours. I also have blepharitis and my eyelids look pink most of the time and the tissue has actually thickened some from inflammation. My eye dr. Does tie it in with crohns. I also have canker sores now and then and a big sensitivity to heat that used to make me break out in a million hives, but thankfully even though I still have the sensitivity, I don't get hives anymore. And then there is the joint pain! It is an awful disease that has so many issues, and this board has helped me so many times to get helpful information that has helped me deal with it.
I will say a prayer for you ncot...please take care.

Post Edited (ragbag) : 8/15/2017 9:13:37 PM (GMT-6)


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4385
   Posted 8/15/2017 8:16 PM (GMT -7)   
Hey ragbag,
Thanks for sharing. I'm supposed to be in remission with my Crohn's, but I do think all these crazy extra migraine/eye issues are related somehow. I have a giant canker sore in my mouth right now too. Well, at least I have some company :-(
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10085
   Posted 8/16/2017 5:51 AM (GMT -7)   
@nssg - It sounds like adhesions are the cause of your friend's symptoms. Adhesions are a nightmare complication, since in effect there's nothing which can be done about them - having surgery and cutting through the adhesions tends to just create new adhesions afterwards. Your friend could have SIBO, if so, a course of antibiotics might help. It's a pretty lame suggestion, but I can't think of anything else to try :/

The downside of a universal healthcare system, at least in the UK, is that mental healthcare provision is considerably more limited and patchy than physical healthcare provision. Nobody wants to spend any money on mental health, so unless you can afford private therapy (and I can't), you are stuck with monthly visits to the GP and little else. All the lies told about support are just that: lies. Try actually having a mental breakdown and accessing any of this support. I have to say, from what I can tell the situation has got much worse over the past few years. It wasn't wonderful 10 years ago, but it was definitely easier to get seen by a psychiatrist or a counsellor, even if it was only for a few visits. But now it seems almost impossible to see anybody. The place that I was at for mental health services has gone steadily downhill over the past five years, and now they are booting me off their books altogether. As you probably know, I was diagnosed with autism a few years ago and I attend an autism social group once a month. And it's not just me who's getting the terrible treatment/services. It's everyone who has the misfortune to be disabled, autistic, poor or unable to cope with life. This country is getting more like in America in its approach to despising the people at the bottom of society.

I'm sorry, you are right, I am depressed. The feeling that I am completely on my own (besides my parents and it's not always smooth sailing with them, particularly my dad) doesn't help. And yeah, I have tried antidepressants - several of them over the years. Long story short, I'm not a fan and I think at this stage - as depressed as I am - I'd rather remain clear-headed than go back to that groggy, numbed state. They don't even work very well, i.e. I still get breakthrough depression on them. What they definitely don't do is make me feel happy.

I think a high-fibre diet would cause more me even more pain. Tbh, I've never felt like food makes a lot of difference to me: whatever I eat it causes suffering in some way a few hours later. As for antibiotics, no, I've never tried those. Well, I have, but not since having surgery I mean. It is something I could ask my GI about next time I see him. VSL#3 is too expensive for me. Steroid foam didn't work 2 years ago. And I wouldn't categorically rule out a faecal transplant enema, but dunno who to ask for that one <_<.

I originally had the same thought as you: that a small part of the colon would be easier to keep in remission than the whole colon, but it seems to be just as intractable as the entire colon was. The only difference is I'm not as systemically ill as I was before, i.e. I no longer get crazy fevers.

@ragbag - Yeah, people don't think of extra-intestinal symptoms when they think of Crohn's, but they can be an absolute bugbear. I've never had flashing lights but I used to get migraines which would begin as a dull ache behind one of my eyes, then progress to a throbbing agony if I left it too long. Ibuprofen would usually knock it on the head, but sometimes I would have to take it every day for a week until the pain finally disappeared. I still get those headaches but they're not as bad as they used to be: uveitis has become my main problem now. And I have Hashimoto's disease, another autoimmune disease. I had none of these problems before I got Crohn's. They might have happened anyway, but it seems strange that they came along when basically my Crohn's stop being mild and flared up heavily. The only thing that doesn't fit the pattern is skin sensitivity: that started after my first surgery and I think oxycodone was the trigger for that :-( It's 95% better than it first was, but can still be an issue, particularly at night.

Well I have written a positive essay. Sorry about that, folks, but having written it all I'm now too tired to go back and try to make it shorter :-/
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15406
   Posted 8/16/2017 8:45 AM (GMT -7)   
The problem, here in the US, is that everyone is the bottom it seems like. The people with money are becoming a smaller and smaller group, and they only work with each other, causing the money to stay in the same people's pockets. I am not going to do anything about being depressed either at this point. It seems like the medicine I was using wasn't too ineffective compared to the side effects. If it made me happy and full of energy it might have been worth it, but I wasn't feeling that dissimilar from my normal depressed self, and I was stuck taking drugs, spending money on drugs, doctors... Food doesn't do much for me either. How about imodium? Have you taken it? Or even the prescription version? I guess it's hard because you have proctitis, so you need to fight the inflammation, and a lot of the stuff I mentioned will only attempt to relieve symptoms. I guess even symptom reduction would be helpful at this point, but it would be nice if we could think of a way to get the inflammation to go away. I could never afford VSL #3 long-term either. I'd take it right now, preventatively for my pouch, if I could afford it.. FT has always interested me. I think you would potentially need to find a trial. That's how it is here. Have you been checked for pathogens? I think i'd give something like flagyl a try if the GI was on board. Maybe you have something bacterial going on that could be cleared.

I get migraines too. I always have. Mine are hormonal and do not respond to tripthans. It's the worst because NSAIDs are not an option. I have had to give in and take one here and there when things have gotten really bad.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10085
   Posted 8/17/2017 6:00 AM (GMT -7)   
If it made me happy and full of energy it might have been worth it, but I wasn't feeling that dissimilar from my normal depressed self

Exactly. Duloxetine did knock the repetitive, looping, negative thoughts on the head for a while, which actually was a welcome respite. But after a few months those came slowly but surely creeping back. I was already on the standard maintenance dose of 60mg and not willing to raise it. Basically, after about 6 months it was hard for me to tell any difference between my antidepressant self and my normal, non-antidepressant self.

I have tried Imodium. My surgeon prescribed me about 6 months' worth of the stuff shortly after my second surgery, which was nice of her but unfortunately didn't make much, if any, difference to the urgency I was experiencing at the time. I genuinely feel like I'm resistant to nearly all drugs, since so few of them seem to work for me or barely at all if they do.

As my pillcam showed active Crohn's, that's the most likely cause of my symptoms. Admittedly that was several months ago and perhaps Entyvio has put it into remission, but my 'gut' feeling is that it hasn't and the Crohn's is still active. Of course I could have an infection as well, but I think that's fairly unlikely. Either way I'd really like to knock the Crohn's inflammation on the head first of all - if I can manage that and I still have symptoms, then I know it has to something else, e.g. IBS, a pathogen, SIBO.

I know I shouldn't take NSAIDs, what with having Crohn's, but I do occasionally :/
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3316
   Posted 8/17/2017 5:05 PM (GMT -7)   
NCOT, have they tried any medications that are for bipolar disorder? It's extremely common to misdiagnose it as depression for years, but one common factor is that antidepressants don't really help at all. Maybe it would be worth asking your PCP for treatment that direction and see if it helps?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 8/18/2017 6:27 AM (GMT -7)   
As far as depression meds go, none of the SSRI's worked for me (prozac, paxil, zoloft, etc.).

about 13 years ago, I was just diagnosed with UC (which I had never even heard of) and had been hospitalized for 10 days, then had to complete my (very intense) senior year of college, then in a state of mania and wanting to "show my body who's boss" I started doing fitness competitions and developed an eating disorder that might have killed me, and the last straw--my mother was diagnosed with terminal cancer. I. Lost. It. Had a complete mental breakdown and couldn't get out of bed, cried all day, wouldn't go out in public exceot to go to tge gym in the middle of the night, binged and purged, and thought about ending it after several months of this. Nothing and no one helped. UNTIL I found a doctor who prescribed me *Wellbutrin*. It didn't make me feel strange or medicated, the only way I k ew it was working is that one day about a week after I started taking it, I woke up and didn't immediately feel dreadful. Then the following week I started going out in public during the day. Then within a couple months I was functional. I have been on Wellbutrin for 13 years now and while I still struggle with anxiety and depression, I have never again been debilitated by it.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10085
   Posted 8/18/2017 8:41 AM (GMT -7)   
@scifigal - No. I was once offered a choice of seroquel or lithium - I turned them both down. I briefly considered the seroquel, but when I got home and read about it, I thought "no way". I've already got enough physical issues from the Crohn's: I really don't want to be adding to them with, amongst other things, drowsiness, weight gain, elevated cholesterol and triglycerides, etc. Yeah, I know, I won't get every side-effect that's listed - but I don't fancy getting any of them, tbh.

@Plucky - Thanks for your story. Like you, SSRIs have never worked for me; SRNIs (venlafaxine, duloxetine) have been slightly more effective - Wellbutrin is one of the few antidepressants I've not tried yet. I googled it and it seems, well, it seems like it might actually be something worth trying. It supposedly has some stimulating effects, which appeals to me. I could do with a boost, particularly now the raging agitation has passed and I'm left feeling drained and listless. The listed side effects aren't too horribly grim either - the main risk (for me) seems to be insomnia and agitation.

Well looks like I'll have to forget about that: even in 2017 it's not available in the UK, ffs. The one antidepressant which doesn't cause grogginess, weight gain, reduced (or zero) sex drive, and they can't provide it in the UK. You can buy it online but that's as dodgy and expensive af.

Good god. There seriously, seriously needs to be a new breakthrough in antidepressants. Anyway, I'm glad Wellbutrin has helped you so much, Plucky.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Kate548
Regular Member


Date Joined Apr 2012
Total Posts : 27
   Posted 8/18/2017 4:51 PM (GMT -7)   
I'm sorry to hear that you are feeling that way! I know how you feel cause I'm feeling it too! I've had this problem for 26 years now and had surgery in May which has given me even worse Diahrrea and Gas. I've pretty much spent the whole summer by the toilet seat!
I have tried Various Brands of Kefir, S. Boulardi, Probiotics, CBD, Cholestramine, Immodium, Oats, Marijuana, the Brat Diet, etc. etc.and still it continues. The same thing happened to me after the surgery I had before this one. The only thing that ended up slowing the flow then was a growing stricture of scar tissue!
I have a Drug Trial Doctor now that has me on Entyvio which is not working but he still wants me to stay on it. What a total waste of time!! (He must be profiting from Shares in the Company)
I've tried almost everything the Drug Companies have come up with but I know they're only "High Tech Bandaids" of varying degrees of effectiveness.
Lately I fantasize of ways I can leave this world and as the years go by I become even more ANGRY that the problem has STILL NOT been fix!
I just can't get over the Fact that the Drug Companies and the Medical people are actually making money from us who are suffering! How can this obvious "Conflict of Interest" be solved?
I then fantasize that the only way this idiocy will ever end is if every Crohn's Sufferer would meet at a rather long and large cliff site then line up along the edge and hold hands and then jump off it together! I think the event should be filmed and put on the News Worldwide! The lasting Message to the World could be, "THEY GAVE UP WAITING!"

There is a theory now that the Condition is caused by a Bacterium called Mycobacterium Paratuberculosis in short "A MAP Infection" from Cows. You can Google MAP + Crohn's Disease then view everything on the subject including the research.
It seems that this is not a New Theory either and Dr. Hermon Taylor in the UK has been studying it for 30 years. The Bacterium hides within white blood cells and the only way to detect it is by its DNA signature.
The other day I read a Summary type Article on Crohn's and how the US will readily spend $450 million on research of Cancer or Diabetes but spends only $4 million on research for Crohn's. And why would the Drug Companies want to cure it for there's NO money in it for them?
So I DON'T hold out much hope that I will ever get rid of the infection that I have!!! When I first became ill my body did NOT lie to me when I started to get Night Sweats and I felt like I had an "Infection" even thou I was told "No it's not one!" by a supposed "Professional". But I can't really blame The "Professional" thou for they were only a "Trained Idiot!" A person who originally desired to help people but then got trained at a Medical School whereby they only see things a certain way and don't think to be an inquiring detective nor come at a problem in an entirely different way. They're no longer curious but fill a round hole in a round way and collect a regular pay cheque and never think to QUESTION the Status Quo!
smilewinkgrin
And see I'm Okay now that I have finished my RANT! But if I were invited to speak to a group of Medical Professionals and/or the Beef & Diary Industries or Government Policy Makers I will be doing some YELLING! I'd of course include some very astute but Constructive Criticism.

I will tell them how it's RUINED my Life & Health, my Career, my Finances, my Social Life, my Family, my Living Situation, my Travels, my Holidays, my Dreams, my Hopes & Aspirations, my Talents, my Potential etc. etc. etc. I will be in their face and I will make sure that I leave a lasting impression!
Any which way one cuts it and tries to deal with their illness, it should still NOT BE HAPPENING!
THIS injustice should not be "managed" nor "accepted" nor put up with!

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6131
   Posted 8/18/2017 6:57 PM (GMT -7)   
ncot. and others. keep hangin' on. I have felt much the same many times. I just hope my mom and wife go before me if it comes to that. then I would not mind so much having another surgery and just not waking up. I just don't want to have it happen while I have dependants....

my best thing that makes me feel better is my 3 dogs I have had over the last 25 years. sometimes they just know when I'm feeling crappy and will do some random thing that makes me smile. whether it be freaking out about a treat or just come and poke me with the cold wet nose. ( although that one could be just wiping snot off) a good belly rub is always good. and the dogs like 'em too!

life goes on, days pass, and you keep goin' .

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10085
   Posted 8/19/2017 12:01 PM (GMT -7)   
@Kate - I'm sorry to hear nothing has worked so far! Dumb question perhaps, but have you been recently tested to make sure your Crohn's hasn't come back? There isn't any point on being on Entyvio if it isn't even keeping you in remission - although do give it at least 6 doses to be certain, as it's one of the slower-acting biologics.

As for MAP, there's a pretty interesting discussion about that on the UC board right now. Firstly in the locked thread, and now in the thread I made moaning about the locked thread. I recommend checking it out, but I would be cautious: don't put all your eggs into the MAP basket. It would be nice if something came of it, but I suspect, just like every other drug out there, anti-MAP therapy will work for some and not for others. Most GIs are insanely convervative when it comes to contemplating anything outside the conventional meds (even if the conventional meds have demonstrably failed), but there are GIs out there who will prescribe MAP antibiotics. If you're interested, ask around, on the UC board on this site, crohnsforum.com and on MAP support groups on Facebook.

I'm not ready to jump on that particular bandwagon, but in a year or two's time, who knows? I certainly haven't had any luck with biologics.

Crohn's still ruins too many lives. It's a sh!t disease which doesn't get a lot of attention, because it's comparatively rare. If it was as common as cancer or diabetes, researchers would be working night and day to try to find a cure. The big bucks are in diseases everyone knows about, not some obscure crappy inflammatory bowel disease that remains hidden behind bathroom doors. Understandable in a way, but still absolutely maddening for those who are left to suffer.

@randynoguts - I know the feeling :/ But dogs are good. I'd love to have a dog of my own, but it's probably not possible (one of the joys of being a social housing tenant).
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 232
   Posted 8/25/2017 6:06 PM (GMT -7)   
I hope I don't seem fraudulent posting on this topic since I don't have Crohn's but am the mother of a son (21) with severe Crohn's. So I am not speaking as a Crohnie but as a parent of one. This site has been so invaluable to me as a mom who is new to a chronic condition. My heart goes out to all of you and I wish I knew more of what I can do as a parent to a son with Crohn's and to anyone who struggles with any condition that compromises their quality of life. I don't know what it is like to panic without sight of a bathroom and have to run behind a tree. I don't know what it is like to throw up so much that I tear my esophagus. I don't know what it is like to be doubled over in pain and attempt to make it to class, only to collapse in a heap before getting there. But I have seen it in my son and I hear it in these posts. But I want to thank you for your courage and your unending support. There could be so much bitterness and since of "why me." Maybe there is but what I read and cherish is your commitment to each other and even to me - a healthy mom who doesn't even take any meds for anything. So thank you for that - And I fervently hope that eventually a drug / treatment can wipe out this horrible life sucking disease!

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10085
   Posted 8/26/2017 6:22 AM (GMT -7)   
Hi Betty Sue. Thanks for your words - they are appreciated :-/

Hopefully your son is young enough that he will be able to benefit from medical advances over the next few decades. The biologics have already made a big difference to some people, but have their flaws (they are horribly expensive and tend to stop working eventually). We just need a few more breakthroughs along the lines of biological medications, and perhaps we can finally knock this sh!tty disease on the head.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 330
   Posted 8/26/2017 6:05 PM (GMT -7)   
Hey NCOT: I can remember so many times coming on the forum where your experience and kind words helped me. I very much hope you're having a better day today.

But, I know how you feel. Having a hard year myself and it's getting me down.

Sending a hug.
Official dx in TI 2007 with with obstruction and 10 day hospitalization.
mild to moderate since then - frequent colitis Also IBS.
2014/16 - rectocele repair, bladder sling, endometrial cyst attch'd to colon
2017 - Increasing flares / Inflamm in ilieum ("red"), new diverticulitis
Current Meds: Asacol. B12 shots /Prev: Pentasa, 6mp, Cipro, Pred
New Topic Post Reply Printable Version
58 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Wednesday, December 13, 2017 5:47 PM (GMT -7)
There are a total of 2,905,080 posts in 318,824 threads.
View Active Threads


Who's Online
This forum has 158190 registered members. Please welcome our newest member, granolameg.
367 Guest(s), 7 Registered Member(s) are currently online.  Details
momto2boys, Erichardson234, MamaLama, PeppermintTea, WI chica, HopeNheal, Luna0324