HealingWell
Search Close Search
☰

Help & Support needed?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/10/2016 10:11 AM (GMT 0)
Morning,

I'm new to this site and relatively new to being diagnosed with UC.

After nearly a year of blood tests, stool samples and finally a sigmoidoscopy in October I was finally diagnosed with UC in January (yes, it took that long to get my results from Octobers scope.... not happy about that!)

Since then I have been on various types of medication, starting with 3x800mg Asacol a day, and melazine suppositories. I didn't get on with the suppositories so was prescribed a 2 week course of Presnisone liquid enemas. The liquid enemas pretty much cleared up my symptoms but I was told I couldn't be on them long term

I was then prescribed a salofalk foam enema, which I couldn't get along with in the slightest. So I was moved onto Salofalk liquid enemas and increase my asacol to 6x800mg a day.

I saw the consultant last week who told me to stop the enemas and now start taking 40mg Preds tablets a day, along with a laxative and calcium supplement.

I am concerned about taking steriods, as I know one of the biggest side effects is weight gain, but I;m unsure of how else they might make me feel.

I'm just at a bit of a loss, feel very alone and feel I'm no closer to any form of answer than I was 5 months ago, and if anything my symptoms are worse.

I'm struggling to cope with the fatigue and 'brain fog' which is affecting my everyday life. I could sleep all day and it wouldn't change how tired and weak I feel.

...please tell me this gets easier?
Posted 5/10/2016 10:30 AM (GMT 0)
It gets better....but you MUST find a GOOD gastroenterologist!!! Unless you find a doctor who will actually talk with you and LISTEN, the journey is more unpleasant. In my case, I can't understand the laxative part!! In MY case...a cork..I could have understood!! LOL You should get the results of a colonoscopy immediately and any biopsies taken soon therafter. There are lots of folks on this site who are much more knowing than I, about the various medications. I went through many, as do most...before finding what works for me. But you must not give up!!! Probiotics help me a lot...Kefir is my choice; and Remicade infusions, Asacol, and Dicyclomine put me into remission finally. Prednisone is ok short term, but, like you...it gives me brain fog, vision fog, wobbly legs, shaking hands, and just bad feelings...but it hides the 'symptoms'. Ask around, search, and find a good doctor who specializes in UC in your area. Good luck to you...sorry you got this curse, but don't give up. It WILL get better.
Posted 5/10/2016 1:09 PM (GMT 0)
Hello Kitty, and welcome to the forum. The initial stages of getting a diagnosis and finding the correct combination of medications and doses can be quite frustrating for new ulcerative colitis patients. I believe most of us can agree and have experienced similar situations. Honestly, the treatment process is a whole lot of trial and error. Try this medication and then see me in 3-4 weeks. Try something else until the right stuff is found. You're going to have to be patient, and keep in regular touch with your gastroenterologist about your progress or lack thereof.

You're correct steroids are for short-term use only, they're great rescue medications that buy you time for another treatment to work. Use them as infrequently as possible.

It sounds like your doctor is pretty much following the bopk/standard treatment path (except for the laxitives, what the heck?). New patients start with a max dose of 4,800 milligrams of oral 5ASA/mesalamine which is your current asacol dosage. Additionally rectal-route mesalamine is tried which is your Salofalk enemas/foam and melazine suppositories, which max dose is 4,000 milligrams daily. Ideally, you should be on max dose oral and rectal for at least a month. Retaining the enemas takes practice and is harder when you're badly inflamed (gets easier as you heal). We have tips for their use in the resources thread (sticky thread above other posts).

If the max dose mesalamine isn't enough then the second class of uc medications are added to the first class. The second class is immunomodulators Imuran/6mp/azathioprine. I'd ask about these as it's the next step, if you're currently experiencing symptoms and struggling.
Posted 5/10/2016 1:19 PM (GMT 0)
Were you checked for c Diff, cmv, ova and parasites etc...

Taking pred and cutting out other meds can be a bad idea if you don't have an exit strategy.
Ask the doctor what that is.
I wouldn't discontinue the asacol.
I would also ask if you can take something like uceris (budesonide mmx released in colon) I am not sure if you have it where you live, or if your health system will approve it. It is slightly less effective than prednisone. However the side effexts are way less than the prednisone.
Another alternative to prednisone which is actually a bit stronger is methylprednisolone. It has most of prednisones horrific side effects except for me the anxiety wasn't as bad and it didn't make me
As hungry as the prednisone did.
That being said, if you are doing a steroid taper the addition of azathiprine or similar will kick in by the time you are off the steroids.
In my humble opinion I would personally rather jump straight to a fast working biologic like remicade and be able to skip the long journey with prednisone.

Taking calcium and vitamin d with pred is a very good idea. Drinking some sort of bone broth is not a bad idea as well.


Bring newly or even not so newly diagnosed is tough.
The fatigue can be from inflammation (what is your crp,esr, fecal calprotectin) can also be from nutritional deficiencies and anemia. Make sure you have your iron panels checked as well as B12.
Try to get as much rest as possible (I know it's hard when all you can do is keep running to poop)
I found chamomile tea was soothing,
Alternating hit and cold packs were great for cramping.

I don't know your location except for Europe. I know St marks is good but I have no clue where you are. You need to be seeing a gastroenterologist who specializes in inflammatory bowel disease. I am a little skeptical of a doc/hospital who takes two months to give scope results. What was the extent of the inflammation? Are they going to do further testing?

Hang in there
Posted 5/10/2016 1:30 PM (GMT 0)
Hi Kitty -

What do you men by "laxatives?" Some of us take psyllium husk or other fiber (metamucil, citrucel, etc) as a way to actually bulk up the stools and make them more comfortable to pass. I am wondering if that is the sort of thing your doctor recommended?

The steroid enemas have always done a good job for me.The gut takes a long time to heal, so I am not sure 2 weeks would bring any kind of lasting healing. Generally I have been on them for 4 weeks and then I have tapered off over another 2 or 3 weeks. Is that a long time with steroids? Yes, but because most of the medication is not absorbed systemically, I think it has been better than the same amount of time with prednisone!

You might try some of the various probiotics that are available. Some of us here have found them very helpful, and other folks, not so much; but it is worth trying. UC is a very individual disease, and we find that we respond to different things, which is very frustrating: there is no universal recipe for staying in remission!

What country are you in? Is it possible to find a different consultant?

Welcome to the forum.
Posted 5/10/2016 1:41 PM (GMT 0)
Thank you all for your replies. You've helped me feel a bit calmer on a day where it all got too much for me.

I live in the UK, so far I've seen 4 different consultants at the hospital, never the same one twice. However, my nurse specialist is incredible, and always gets back to me very quickly (6 minutes this morning from sending an e-mail to getting a phone call) I'm not sure if I will get a more 'permanent' consultant as time goes on?

I've been prescribed a course of "laxido" laxatives, as I currently have problems passing stool, and it's often very hard, so he's trying to regulate it. However, first thing I read on the leaflet was "DO NOT TAKE if you have UC or Crohns" Which is why I contacted my IBD Nurse this morning, she said it is okay under control of a consultant.

With regards to the steroid enemas- they had an almost immediate effect, really cleared up most of the symptoms, and then 24 hours after the last one all symptoms were back in full swing.

I've started taking the steroid tablets this morning, and will start on the laxido tonight....

I just feel at a bit of a loss at the moment. But you've all helped calm me down a little bit, so thank you.
Posted 5/11/2016 12:22 AM (GMT 0)
I would try sodium docusate (a gentle stool SOFTENER that prevents constipation), not a laxative.

Talk to your Pharmacist about these laxatives they've given you. It's very concerning that the monograph says 'do not take if you have UC'.

It might be wise to get to the bottom of *why* you are having hard time passing BMs vs jumping to something harsh like a laxative.

Is your GI doctor an IBD specialist? It seems like many are NOT.

IBD is its own kettle of fish.
Posted 5/11/2016 2:31 AM (GMT 0)
You need to be back on the enemas to help get you through the constipation phase....that's part of the healing process symptoms with inflammation limited in the rectum.

Were you also bleeding?

Docusate is a good stool softener...I used it many times in the early years. Helped a lot.

I would suggest you add a fibre supplement and probiotics.

If you haven't been on the pred for a long time, you could request to go off it and get back on the Salofalk liquid enemas...since you could retain them. It could take well over a month to get notable improvement...the healing happens in increments and with that symptoms do change.

Welcome to the forum,
q
Posted 5/11/2016 1:13 PM (GMT 0)
I was bleeding a lot- that was what I initially went to the doctors first. Noticed blood in my stool but as it was a couple of months before my wedding, I thought it may be down to stress, a fissure or maybe piles. But then it continued to get worse after the wedding and my cousin who has crohn's said his main symptom was bloody diarrhoea and I was like... AH, alarm bells ringing.

So, after 2 days on the steroids & asacol, and no enemas, today I have passed what I would call semi solid stool (usually it's very solid, like little nuts, blood in the poop and turned the toilet water bright red) but today...no blood! Could the steroid tablets be working that quickly? Either way, I'm happy as it's the first time in months I haven't had bright red toilet water!!!
Posted 5/11/2016 1:44 PM (GMT 0)
Yup that's prednisone for you!!
Posted 5/11/2016 1:58 PM (GMT 0)
I doubt it is constipation sadly, it's probably tenesmus.

tenesmus: a continual or recurrent inclination to evacuate the bowels, caused by disorder of the rectum or other illness.

A lot of people confuse this feeling with constipation because you feel like you need to go but you can't. I would be careful with the laxatives. I think the best thing would be to try to push forward with mesalamine, both oral and rectal. Of course stool tests are important to rule out other issues. Some people are intolerant of mesalamine, if that is the case, you will have worse symptoms or side effects. Steroids can work very quickly! The problem can come when you taper off. Hopefully you can taper off and stay in remission with mesalamine. That would be the best case scenario, and it's not uncommon at all/
Posted 5/11/2016 4:32 PM (GMT 0)
If you have constipation I would think your proctitis needs attention. The mesalamine enemas/supps would come in here and you could use these for maintenance. I also have to say that I use anucort (steroid supp) about 2/ week and my GI is okay with that. (even though it is a steroid) I would try to get a rectal regime going so you could avoid oral steroids the best you can in the future. Also metamucil (or something to that effect) and probiotics are a very good idea as well.
B
✚ New Topic ✚ Reply