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Looking For Advice On My Treatment and Condition (Ulcerative Colitis)

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Ulcerative Colitis
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Posted 1/20/2016 8:09 AM (GMT 0)
Hello

I have been following this community for a while and have gotten some great isnight but am looking for some specific advice for my current condition (see end of post for my questions). Any help is appreciated! Thanks in advance and sorry for the long winded post.

A little background on my condition: I was diagnosed with UC in June of 2014 ( I am 27 yr old male). I had pretty mild symptoms initially, mostly blood and high frequency of going to the bathroom (6-10 a day). I started on Lialda, then budesonide, then prednisone (December 2014 started pred at 40 mg). I kept on getting worse – increased frequency, increased blood and lots of accidents and lost boxers/jeans/shorts. Eventually I started Simponi and Azathioprine in April 2015– no effect. Actually I got so bad on Simponi I had to be hospitalized in October 2015 (I was still on pred – tapered from 40 mg to 25mg over several weeks).

Since my hospitalization I have been on prednisone (40 mg) and Remicade. I have seen no effect with the Remicade, and in fact my symptoms got slightly worse (even before tapering - tapered my pred from 40mg to 15mg (5mg every week). After a colonoscopy to confirm my UC got worse (it is now diagnosed as pancolitis) my doctor bumped me back up to 40mg and will start me on Entyvio (first infusion to be beginning of February 2016).

However, even after bumping me back up to 40mg of prednisone over a week ago I am still going to the bathroom around 24-30 times a day and also find myself having some mild stomach pain throughout the day and when I have a bowel movement imminent. Thankfully, there is a lot less blood in the stools, and around 50% of stools are semi solid instead of mostly liquid. However, I don’t get much sleep because either insomnia (my legs get really restless) or I get up to the bathroom.

But now my doctor is bumping my pred up to 60 mg to try to reduce the frequency. Other than the frequency and mild pain I feel fine, don’t feel dehydrated or anything.

So my question for you guys/girls is:
Should I be concerned about my pred being so high for so long? – I have basically been on 40 mg of pred since December 2014 with various attempts at tapering it. The worse side effect I have seen so far on me is acne and sometimes sleep issues. I think I have also lost a fair amount of muscle mass (but that could also be due to UC symptoms. Is there anything I can do to counteract potential side effects? (e.g. diet, supplements)

What is a flare up ? Have I been in one since I have been diagnosed? I basically have not had less than 10 bowel movements a day for over a year. Does that mean I have been in continuous flare up? Is my UC really bad? Especially now that I am going 20+ times a day

When should I go to the hospital? Last time I went because I had a high fever and along with 15-20 bowel movements/ day. However, now I have no fever but my BM are higher. I guess I am not sure when I should go to the hospital/ what symptoms to really be concerned about.

How do you manage the fear of going out? I wear diapers now whenever I leave my apartment – but I do notice that whenever I leave I get anxious and I think that makes me need to go to the bathroom more urgently. Do any of you have tips for how to manage stress/anxiety when leaving safe areas?

PS: I have seen 3 different GIs who have confirmed my diagnosis and am looking at getting another opinion for treatment at Cleveland Clinic which I think will include a whole team approach (e.g. surgeon, nutrition, as well as GI). However I am still interested in trying to get the perspective from this community about my condition.
Posted 1/20/2016 8:35 AM (GMT 0)
sorry to hear this

yes, you have severe UC. Pancolitis means it affects your whole colon so it is the worst it can be. All colitis starts in the rectum and works its way upwards, 4 different types. There is proctitis(just rectum), procto-sigmoiditis(rectum and sigmoid), left sided(rectum, sigmoid and left side of the colon) then pancolitis(whole colon).

You have continuously been in a flare. If you've never got below 3 or 4 BMs a day and have never been having solid fully formed BMs, without blood or mucous then you've never been even close to being out of that flare.

Prednisone is bad news but can be a quick fix. There is no magic number of days/weeks/months being on it is considered ok. But being on it over a year is definitely not good, especially at high doses. It shouldn't be used long term. If you are on it, calcium supplements should be used. Also, weight training for your bones can be helpful to combat some of the long term effects like osteoporosis. But you have to be very careful with weight training on pred because it is a catabolic steroid and produce more cortisol in your body. IT will break down your tendons and make you much more viable to seriously injuring yourself if you train too hard. But, from how bad you are flaring, weight training seems completely out of the question anyways.

40mgs is a lot of pred. 60mgs is even more and I think there have been studies that have shown that taking anything more than 40mgs is kind of pointless.

How many remicade infusions have you had? If you've just had one or two, you need to give it more time. Have you at least done all of the loading doses? Even after the loading doses, they can up your dose from 5mg/kg to 10mg/kg or even up the frequency of infusions. I get infusions like every 4 to 5 weeks right now. Some docs will say not to expect much changes from remicade until after your 4th or 5th infusion.

Back to the prednisone for a minute, it sounds like it is doing absolutely nothing for you. If you are having 20BMs a day on 40mgs of prednisone, then I would wonder what the point of even taking it anymore is. It isn't working for you and you are only getting the bad side effects from it.

As for hospitalization, I've never been hospitalized with my UC and have always wondered how people wind up in the hospital. I've been through some really rough times but never thought going to the hospital would do much. From what I gather, most people wind up in the hospital from dehydration or maybe from losing so much blood and becoming super weak/anemic or maybe just the pain being so bad they thought they had to go to the hospital. I think some people might have went to the hospital before they were diagnosed too because they didn't know what was wrong with them. I have a high tolerance for pain and have always just figured the hospital wouldn't be some miracle cure so I sat back and dealt with it.

I guess continue with the remicade unless you've had like 5 or 6 infusions so far with no improvement. Yours sounds like a really tough case as prednisone doesn't even seem to do a thing and for most people, prednisone at 40mgs can get you feeling better rather quickly.

You probably don't want to hear this either, but you should probably start looking into surgery also. IT sounds like you would be a candidate for it, especially if remicade and entyvio don't wind up working.
Posted 1/20/2016 1:00 PM (GMT 0)
ya, the pred needs to go - it can really screw with you in many ways - but, you still probably have a life to live so it's like a con game - pred gives, but it also takes away -

what have you tried diet wise ? have you cut anything out ? i was dx'd with pannycolitis also many years ago - but my body responded to the normal med treatment - at least for a while - when they stopped working i started looking at what was going into my colon - I now avoid all grains and have been off meds going on 4 years i think - but just keep in mind that we are all different and as such, what works for me, may not work for you -

i don't see that you mentioned rectal meds - did you ever use them, cuz they can literally be a colon saver - they always helped me -

i also agree that ai this point, it might not be a bad idea to talk to a surgeon - the more you know about your options, the better equipped you are to make good decisions going forward -

hang in there mango man -
Posted 1/20/2016 10:59 PM (GMT 0)
Thanks for the reply guys. Super helpful.

Yeah I forgot to mention I have tried suppositories: hydrocrotisone and mesalamine (on a side note I know understand how people get weird things stuck up their butts - I just push those suppositories slightly in and they get sucked up into oblivion. Impressive and terrifying the first time that happened). Didnt see much improvement with either - am trying to continue with mesalamine as I saw some improvement with it but I currently cant keep it in long enough. I am also taking the VSL#3 satchels - two a day.

As for the remicade I had 4 doses - during the whole time my condition got worse. I think that combined with the fact that Simponi w/ Azathioprine also did not work made my doctor think that it is not worth continue with TNF blockers and switch to Entyvio

I have also tried a couple diets - did gluten free for five weeks and strict AIP (autoimmune protocol) for three weeks. Saw no difference with gluten free and got worse with AIP. After AIP I tried isolating some common irriants such as dairy or nightshades, again didnt see much difference off them or when I re-introduced them. Interestingly the times I have had the best times in terms of bowel movements were when I ate horrible meals such as Mcdonalds or pigs in a blanket. I know diet must have some impact I just dont know if I have just not found my irritants or am doing something wrong. I am trying to find a dietitian who can work with me on this. The only thing my doctor recommended was low fiber - I did that for couple months but I felt it wasnt the healthiest diet in the world (lots of white flour and little veggies or fruit) so am back to a normal diet now.

I am in the process of talking to surgeons, kind of made me queasy when they explained the surgery options. But then again the piece of mind and normality I would have in my life again sounds great. However I am hoping enytivo works and if not maybe try Fecal Matter Transplant if possible
Posted 1/20/2016 11:25 PM (GMT 0)
definitely look into FMT - DIY is an option if you and your contributor are game -

the unfortunate fact is that for many folks no diet will fix things, and for those it might, finding the right one can be near impossible - i am one of the very lucky ones -

have you tried mesalamine enemas ? they give much more coverage - and they are light years ahead of suppositories in the fun department smilewinkgrin
Posted 1/21/2016 6:32 AM (GMT 0)
Hi Mango Colitis

I was hospitalised for 8 days over Xmas and was only going up to 10 times per day, though was on 40mg Pred. I had been struggling for two months with rectal meds, Pred and Melsalazine. I was threatened with surgery and it took iv steroids and Remicade to get things under control, though this took 3 long weeks. If you are really experiencing uncontrolled bms even on Pred, then you need to be in hospital! Don't think you have to be on death's door. I guess it is generally best to plan for elective surgery rather than emergency surgery, so I hope they can get the flare under control.

Good luck and so sorry to hear you're having such a bad time. Catherine
Posted 1/21/2016 6:54 AM (GMT 0)
Hi. Pred is keeping you awake. Also 2 packs of Vsl is a lot!!
Posted 1/21/2016 10:20 PM (GMT 0)
Thanks guys for the reply. I guess three other questions popped into my mind:

One thing I want to do is have much better data about my condition when I go see doctors - so tracking time and frequency of bowel movements is something I doing now. I am also thinking of tracking what I am eating more diligently. Do any of you guys track/monitor your condition closely? If so what do you monitor and how?

My other question is what practical tips do any of you guys have for living with UC? What I mean by that are the little things you do such as special soaps you use so your hands dont dry out as much from washing after going to the bathroom frequently? Or mental strategies to relax when going out so you dont worry about the bathroom all the time?


Finally having such a bad UC makes me think that surgery may be necessary since it puts me at a increase risk of colon cancer. But does UC have to be active the whole time for the risk of cancer to be increased or just merely having it (even if its under control) increases the risk?


Thanks for the help
Posted 1/21/2016 10:56 PM (GMT 0)
monitoring: can't help with that - i'm anti-monitor wink focusing too much on the details doesn't work well for me - head in the sand sorta thing - my deal is just looking at how i FEEL and what i can and cannot do -

the list of strategies would be endless - folks with UC are the MacGyver's of the disease world - we hide, we adapt, we compensate, etc.

handwashing: i use to not dry every time after washing - just flapped my arms a bit, or stuck them in the oven - i think towels can be too abrasive on sensitive hands - - bag balm is good too -

depends -

boy, i never could get much relief from the immediate need to go as soon as i walked out the door - my mind simply had no control over my colon - imodium became my close and very dear friend - for me it was no free lunch, but it did allow me to do things -

imo, the jury is still out on the C thing - i think there a way too many variables to come to any concrete affiliation - for me, dealing with one thing at a time is enough - thinking about what COULD happen just wasn't gonna happen - it's one thing to quit smoking to MAYBE avoid the big C, but to make a big decision like surgery based on a maybe doesn't make sense - for most, surgery isn't a want, it's a need - and living life to me qualifies as a need -
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