In a bad flare, looking for support

in a bad flare, looking for support

I have ulcerative colitis (pancolitis). I was diagnosed way back in 1981. For the first 20 years or so, I was mostly well. I'd occasionally have bad flares, but moderate meds would put me back into remission and often I took no meds at all.

Then came 2002, with many emotional stressors - lost job, lost career, lost house, lost relationship - and it sent my body over the edge. Once it got going, nothing could stop it. I have been flaring almost constantly except for a two-month remission which ended abruptly with a colonoscopy. Colonoscopies often cause me to flare and I knew it, but my colonoscopy 6 months previously had shown indeterminate dysplasia, and my doctor wanted to be sure I didn't have colon cancer.

So now I'm a complete mess again. The 6MP wasn't working, the Remicade wasn't working, the cortenemas weren't working. The very short term steroids weren't working (I was refusing to take prednisone.) Now, after a brief hospitalization, I've surrendered and I'm back on prednisone - 40mg a day. It's helping, but I can feel my cheeks puffing up as I type. I dread the disfigurement. I felt so embarrassed and humiliated by my appearance last time. Also, I'm already vulnerable to osteoporosis because I'm hyperthyroid. But what can I do?

I had a really weird emotional reaction to being in the hospital - a strange amalgamation of guilt, shame, and denial. "I don't belong here, I'm a whiner, others are sicker than I am." I checked myself out two days early, much to my doctor's annoyance.

I'm unmarried and my parents are dead. I rely heavily on my brother and sister for emotional support, and they understandably don't enjoy hearing the "gruesome details" (as my sister puts it) of my symptoms. So I was looking for support groups - somewhere to talk to fellow sufferers.

Should I try the paleo diet again? I did that years ago - can't remember whether it really helped or not, just that it was a giant pain to stick to.

Welcome
I feel bad that you are having a lot of difficulty and I hope that you find some relief of your symptoms soon. I am not familiar with the paleo diet but i am sure more members on here can give better advice on that than me.

Wow you've really been through the mill!

I wouldn't worry about seeming like you're whining or guilty, I felt the same way in hospital...like I was making a big deal over nothing.

But IBD is a big deal, it's a hard thing to get through and you do need lots of support, i'm not surprised you flared after all that stress. It will probably take you a little while to adjust, but if the meds aren't working or they're causing more problems than they fix go back to the doc, if that doesn't work ask for a second opinion. There's no point being on meds if they just do more harm.

As for the stress, it does sound like it's a real issue for you, maybe some stress management, even just meditation or taking some yoga classes, that might help you to cope.

One thing at a time, you really don't have to deal with everything all at once.

I really hope things start to look up for you, it's a horrid situation. :hug:

Oh and Welcome you'll find loads of support here, it's fantastic.

Thanks for the welcome, and for understanding my guilt feelings. I have horrible spasms (learned recently there is a name for this - rectal temesmus) and the only way I can stop it is to lie in bed perfectly still. Even a chair is too much - must lie down. It is very difficult to get anything done in this position. And yet I yell at myself all day long for being lazy and not working when I so badly need to work. It's ridiculous. (I'm currently in bed with the computer on my lap.)

For a while I was relying on medication to stop the spasms so I could function, but it was a bandaid approach that made me sicker over the long run. When I was hospitalized, my sigmoid colon was so swollen that stool couldn't get through. I was severely constipated and passing only gas, mucous, and blood. The spasms were so horrible I was crying on the toilet. (Doctor said I also have a small rectal tear.)

So now I'm out of the hospital and I take MiraLax every day to make sure I have enough diarrhea to keep things moving (sic). At times my area of inflammation has been at the top of my bowel. That is more dangerous health-wise, but the bottom is more painful.

No yoga classes or the like for me right now. I'm almost completely immobile. Sometimes in the middle of the day I'll have a period of colonic serenity where I can run out and get more toilet paper, but for the most part I just lie here and try to amuse myself with TV and my iPad. I want to avoid the opiates to stop spasms because they are constipating and addictive.

My brother says my dread of moonface on prednisone is silly vanity. But it was simply horrible. I went from being sort of pretty to being gross. My sister's mother-in-law said she didn't recognize me because I'd gotten so fat (it wasn't so much weight gain as moonface). No more appreciate looks on the street. I'd look in the mirror and want to cry. I think my cheeks are already starting to puff up, but I can't start tapering off the prednisone yet. My doctor said I can't taper until I have experienced some significant improvement. I am better than I was, but not enough better yet.

I really like this site from what I've read so far. I'm so glad I found it.

Oh dear! Immobile is not good! The only other thing that might help is deep breathing (the centre of hatha yoga) I used it when I was sent to a clinical psychologist to control my stress. It's pretty simple, just lie on your back and breath in to allow your tummy to fill like a balloon and then release, do it quite slowly and repeat, I find if nothing else i'm concentrating so much on my tummy that the pain subsides for a while.

Glad you like the site, i'm new myself but beginning to think it's the best thing i've done in a long time!

Welcome, Canope. It sounds like you are going through a rough time right now. I am glad you found our community. I hope you feel better soon!

Hey Canope and welcome!! There's a thousand posts on here about the love/hate relationships with pred. But it seems to me having temporary moon face with mobility would be better than being immobile and sick all the time. Good luck!!

I know that moonface is better than what I've been going through. I just hate the moonface so much. I'm going to try to minimize it this time by being careful of calories and salt - knowing what prednisone does to appetite and water retention.

One thing I've been struggling with quite a bit lately is guilt about not getting stuff done. I don't seem to fully accept that I'm ill. I'm staying in bed because I have to, but I yell at myself all day long for not being productive. It's partly because I'm self-employed (have to be because I'm out too much to hold a regular job), and self-employed people don't get paid sick leave. If I don't start making money soon, I'm in a lot of trouble.

What do people do about this "can't be functional" issue? A flare can last months, years, and I don't have anyone to jump in and support me when I can't work.

Hi canope and welcome,

You certainly are doing tough at present and it seems like it is becoming a vicious cycle. Guilt and anxiety about the pred causing stress which is going to impact on you in more ways than one. Not to mention your financial worries.

Are you not able to access disability or some other social security payment to assist during this difficult time? I don't know where you live but I would imagine that is what most sufferers in your situation would have to turn to to manage.

Perhaps if you browse through the food and diet section you may be able to pick up some ideas there.

All the best,
Dusty

Hi Canope,

Welcome to our forum.

I feel sad that your situation seems unbearable. One of the things I'd like to say is that your beauty doesn't come from the appearance of your face. I've never met you, nor have I seen your face, but I already know you have enough beauty to deserve to be loved and cared for, and about. That is nothing to be ashamed of or to feel guiltay about. What also is beautiful is that your soul is reaching out for others to care about you and to care for you while you navigate through your pain and distress.

That's the ironic thing about having a soul. It realizes the beauty of being, and the unique place each of has in this world, and the need so many others to have exactly what each of us possesses through different people and in different ways.

What I'm saying is that you have a purpose in this life even though you are in pain, and even though you are afraid that how you look on the outside is "bad". Your soul is reaching out for the help you need. I would also assume your soul would like to see your mind helping it out - instead of perhaps punishing yourself for the beauty which is you just as you are, right where you are.

If I'm not overstepping a boundary, I'll suggest that you try to locate the soure of your beauty and try to understand that you deserve help and support when you're in pain and misery. Each one of us is worth at least that much.

Now let me get beyond the philosophy and hope that I can be of some support.

One thing I've noticed about having my colon malfunctions with Crohn's disease, is that, like you, my large bowel is a pretty spastic organ. It spasms if it's happy, it spasms if it's sad, it spasms if it gets excited, it pretty much doesn't do much more than spasm whenever it wants. I'm not sure anymore if it knows how to do anything other than spasm. So I have this in common with you.

My colon also has displayed an uncanny feat of magic with displasia as you have spoken about. Now you see it, now you don't. I had two nearly back-to-back colonoscopies, which may have made me start flaring again, spastic fellow my colon has become. For the moment, the displasia has vanished, but I do have a photograph of the little bugger. He was certainly there at least for a few moments. I decided to name him "Nigel". Nigel the nodule. But now I'm thinking about renaming him Houdini. So I have displasia in common with you.

Now about osteoperosis, I also classify as being vulnerable, just like you. But perhaps different than you, I have a serious knee-joint deformity caused by osteoarthritis that Crohn's disease accelerated. The joint has become deformed and "broken-down" beyond repair. It needs to be removed and replaced - something like a broken power-steering pump in an auto with high miliage needs to be removed and replaced. Because I also have Mr. Spastic Colon, Nigel the disappearing nodule, and Crohn's Disease which has the ability to flare at the worst possible moment, I'm not able to dance nearly as good as before, and the knee brace does attract a few puzzled looks when I'm wearing shorts on the hot days.

Now I say all of this to hopefully amuse you, and maybe put a smile on your face, but to also let you know that you are not alone. I understand how you are suffering. Because you are right to a degree. Much of our friends and acquaintances assign a high degree or "worth" to our outward appearances and our abilities to be "productive". It appears that you are allowing this "external" concern become your "internal voice". I also am familiar with that practice too. A very good friend once told me "I hope that works out for you."

Of course he was being a smart@ss, but I understood what he meant. So for today, I'm learning how to not add any more discomfort to my discomfort by being as concerned with external opinions. When you think about it...if someone doesn't approve of your appearance or slowed "productivity", their disapproval absolutely cannot produce more physical pain or symptoms. It's physically impossible for another person's disapproval to harm you in any way. Correct me if I'm wrong?

Then it behooves me to keep it that way by not allowing myself to make my condition worse by adding emotional distress about their disapproval. Now let me add, if becoming emotionally distressed about the approval of others could improve my overall physical condition and bring my colonic symptoms into a manageable state, I'd be worrying 24/7 because I can to that with skill well beyond my years. My friend was right. "I hope that works out for you."

Well now about "Spaz" (my colon), I'm being treated for migraine headaches with a prophylactic medicine called "Lyrica". As my Neurologist knows, genius that he truly is, Lyrica is an anti-siezure ant-spasm type of medicine. Lyrica also has an oddly beneficial side-effect of relieving anxiety and depression. God bless this specialist because he actually took the lead in treating my Crohn's Disease symptoms, which also includes anxiety and depression, along with my spastic colon, by increasing my dosage of Lyrica. My GI specialist merely concurred and gave his approval because, indeed, he agrees that Lyrica, although not prescribed for bowel conditions, has documented research showing a positive benefit in treating IBD and IBS because of both the anti-seizure properties and the side effect of relieving anxiety.

There are other medications in the same class as Lyrica with similar properties which include "Topomax" and "Neurontin" (check my spelling). If you have a specialist who is open-minded to "unconventional" treatment therapies, as in prescribing medication because for it's "side-effects" instead of what it was originally developed to treat, then you might find some relief in your colon spasms AND quite possibly in your mood symptoms by using this type of medication. It sounds like a possibility if it hasn't yet been tried.

Most importantly, I do understand how hopeless you feel because I've been there too. IBD can be very debilitating when it starts creating the pscho-social symptoms in addition to the physical pain.

Please give yourself a break and work on being kind to yourself, while at the same time stay willing to try different treatment approaches.

We are here for you and send you our (((((((canope)))))))) cyber-love and support. You are a beautiful person and deserve much more!

Joseph

Hi Joseph. I'm still absorbing your long caring message, but in the meantime I just want to say thank you so much. I also get migraines, and there are some issues with my migraine medication perhaps making my bowel worse. I want to look into the solutions you suggest.

Thank you again for your support.

I'm feeling world's better, and my doctor is starting to taper me off the Prednisone. Being pain-free is almost like a high, euphoric. I want to go outside and smile at the trees. Being sick sucks, but on the plus side, if you've experienced serious chronic illness, you experience health in a way that most people do not. You appreciate it when you have it - can feel happy just to be alive and functional, no matter what other problems you may have. Health is the most important thing in the world - never take it for granted.

I just hope I'm able to taper safely off the Prednisone, and get into a solid remission that lasts. It's been a very long time.

Wow I hope you get back into remission soon. You and I both started having problems around the same age. Mine was 15 and I was diagnosed then as likely Crohn's because they couldn't come up with anything else. I haave also been pretty much in remission for 22 years. I kept watery loose stools and going to bathroom all day long and sometimes waking up at night to go if I ate something that was bad like pizza the whole time, but pretty much Ok other than that. Now I'm in the middle of a real bad flare that has put me out of work a lot and in the hospital for a day feeling hopeless. I'm out per doctor's orders till Monday and hoping I can get it back on track by then. You are definetly not alone. Hope you get better soon.

You sound a lot like me - parallel paths. When I was 13 - or maybe I was 12, now that I think about it - I went on a cross-country trip with a local community center. We were somewhere in the midwest and I woke up in the middle of the night with the worst intestinal pain imaginable. I have experienced it many times since - violently painful spasms that have me crying on the toilet - but this was the first time. I had never experienced pain like that before and I was terrified. I never told a soul. I was so afraid that I thought if I didn't tell anyone it wouldn't be real.

My flares generally consist of bloody diarrhea, vast amounts of mucous, and horrific spasms - which I recently learned have a name, "rectal temesmus". I get extremely bloated, and at times look 6 months pregnant, which is embarrassing. I can wake up in the morning with a flat stomach (if I haven't eaten much the night before), and after breakfast I look 6 months pregnant again, and I can't bear any pressure on my gut. I was complaining about this to my brother recently and he said, "Oh good, more cousins!" (Funny guy.)

I've been having a very hard time for the last several months and the Prednisone is finally ending it when nothing else worked (40mg - today down to 30mg). I'm just so happy not to hurt! I went to a movie today - left my apartment for hours, and walked among the living without doubling over in pain or searching frantically for a bathroom. It was awesome - first time in MONTHS that I haven't been in almost constant pain.

I'm unable to hold a job because of colitis - I miss too much work. I'm self-employed which is both good and bad. The good part is that I don't have to explain to anyone if I can't start work until noon. The bad part is no paid sick leave. ((sigh)) I'm pretty broke, but so happy today to be pain free that I'm practically euphoric.

I hope you feel better soon. Have you ever tried Endicort? I had an ex with Crohn's (weren't WE quite the pair, competing over the bathroom), and his flares stopped permanently with Endicort. I've heard from others that it's really great for Crohn's. It's a steroid like Prednisone, but without the Prednisone side effects and you can stay on it longterm. It doesn't work with UC (my problem) because the drug doesn't make it to the lower bowel.

canope said:

I'm feeling world's better, and my doctor is starting to taper me off the Prednisone. Being pain-free is almost like a high, euphoric. I want to go outside and smile at the trees. Being sick sucks, but on the plus side, if you've experienced serious chronic illness, you experience health in a way that most people do not. You appreciate it when you have it - can feel happy just to be alive and functional, no matter what other problems you may have. Health is the most important thing in the world - never take it for granted.

I just hope I'm able to taper safely off the Prednisone, and get into a solid remission that lasts. It's been a very long time.

Click to expand...

I know about experiencing things that other take for granted. I hung a bird feeder out my window and the Yellow finches are amazing, my other window has a hummingbird feeder. I planted two Colorado blue spruce trees last year and realized it they are slow growing. I have apple trees and gardens, atv trails to run my dogs. When I am down I am down but I try to get over it and appreciate what I do have and how others miss out what I see. Make sense?

Glad you are hanging in there.:smile:

I'm having a less-good day today than yesterday. I've already had to go to the bathroom 7 or 8 times, and my gut feels bloated and crampy. I just called the doctor to ask if I should taper off the Prednisone more slowly.

Hi Joseph,

I don't know if you are still around. I want to again say thank you for such a lovely, supportive letter. I just read it again.

I just started Topomax for the migraines. Perhaps I will be lucky, like you, and it also will help with my IBD. I've been having hellish problems with migraines the last week because I got my period - I get menstrual migraines. It would be a lovely thing if I could free myself from this. I started with 25mg of Topomax and then after a week went to 50mg (to avoid side effects). I'm not sure I'm yet at a dose that prevents the migraines. I've only just started at this level. I've read that 100mg is the usual dose for migraine prevention. Do you have familiarity with Topomax dosage levels?

I'm still trying to get off the Prednisone. I dropped to 20mg today. I've gained about 6 pounds since I started and I have moonface. I also have fairly severe lower intestinal bloating. I look 6 months pregnant all the time - don't know what I can do about that. I know that health and many other things are more important than appearance, but I still sad about the loss of physical attractiveness. I never used to look like this. It's a loss of a kind.

On the plus side, my bowel symptoms have eased quite a bit. I'm no longer in horrible pain, which is pretty big. The trip down from the Prednisone is mostly okay, but a little bumpy every time I notch down again. I'll get diarrhea for a while and then it will stop. I'm lowering by 5mg twice a week, Mondays and Thursdays. I talk to my doctor on Monday and Thursday morning.

I got a nice call this morning from a nurse on the GI ward at Mt Sinai where I was hospitalized - follow-up call to see how I was doing. I thought that was quite nice, and perhaps unusual. Do hospitals usually care that much about patients after they are discharged?

Hi Canope,

Yes I'm still around. All in all, taking the Prednisone seems helpful for your bowel problems. The taper seems a little steep. If you have trouble, it will probably be going from 25-20-15. Normally, the taper is 2.5mg to 5mg per week. That might limit the side effects going down. If it were me, I say because I watched this with two women I know, I'd taper slowly between 25 down to 15...2.5mg per week.

About the weight and "puffy face", those are not permanent. Once you're no longer on the medication, the weight and puffiness will probably be gone in a month or two - provided you haven't been taking pred for a long long time to build a dependence.

I'm not sure about the Topomax dosage, but I'll bet it will help with your colon spasms. It is pretty much a top-of-the-line anti-seizure/anti-spasm medication. The only reason I couldn't take it was because of having a kidney stone history. When I started with Lyrica, my migraines went from 8-10 per month down to one every two months - where it is now. And it also took about 3 weeks to taper up with Lyrica from 25mg to 300mg which is not the highest clinical dose.

Also there is an excellent Triptan medication for when you get the headache. It's often overlooked in migraine therapy because it is the mildest and takes the longest to work on a migraine. If your migraine onset is two hours or more from start to strongest pain, the drug is called Amerge, and it has far fewer side effects than any other Triptan (Imitrex, Relpax, etc).

I hear Mt Sinai has quite a reputation for GI success. It's not surprising they contacted you. Not many hospitals contact you around here, but the Cleveland Clinic is so integrated, that your primary care physician's nurse will follow up. My GI contacts me often to follow up which was something I'm not used to either. I'd say you are probably in real good hands.