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Ulcerative Colitis
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Posted 5/29/2015 9:23 AM (GMT 0)
Hi!

I have been using these forums for a while to seek advice but never posted before so here it goes...

I am a 26 yr old female diagnosed with Ulcerative Proctitis in 2010 and have had on/off flares since but generally managed to keep them under control with Mesalasine suppositores and restricted diet.

However, ever since December 2014 I have been in one massive flare with really odd symptoms. It started normally (cramps, urgency, blood and mucus etc) so I started my usual med routine but then I noticed I was going very much the other way (excuse the details) where I would not be able to go for several days and when I did it was very hard, 'rabbit dropping' stools, but still with blood and mucus and abdominal pain.

After several bloods taken and finally a colonoscopy they said I was in fact not having a UP flare... They started me on Movacol laxatives and Dulcolax stool softner to get things going and this seemed to be working, but then started going too well so I reduced the dosage (as they told me too). Since then it has gone back to the other way yet again. I am still bleeding every time I pass (sometimes just blood and nothing else) and have not had a movement without blood since this started in December. The abdominal pain however has been getting worse, and much higher.

I have yet another appt next week but in the meantime I wondered if anyone else had experienced this as I am at an utter loss :(

Why am I still bleeding? Could it be something wrong with my gut higher up then my UP? It is not piles or hems. Also, I get large lumps forming on my tummy when I lay down, like things are getting stuck in there...

Apologies for the rather long first post but if anyone has any advise I would be forever grateful,

x sad
Posted 5/29/2015 11:18 AM (GMT 0)
Sounds like you need either a flexible-sigmoidscopy (done in-office without sedation) or colonoscopy to see exactly what's going on up there. Call your gastroenterologist and explain your resurgence of uc symptoms and he/she will want to do some diagnostics to find the cause (perhaps the aforementioned scope and a stool test). Blood is likely a worsening of uc symptoms, unless you have a history of hemorrhoids. Your uc could have spread, and you might need oral-meslamine to treat any higher up inflammation.
Posted 5/29/2015 11:23 AM (GMT 0)
Thanks so much for the reply! I will call the gasto nurses today and see what they can do - I have an appt with the specialists in July but hopefully they can bump me up the queu perhaps :)

Thanks again,
Posted 5/29/2015 1:45 PM (GMT 0)
Things are probably very slow in your colon. A lot of us struggle with this.

You can take a stool softener like Miralax to keep things softer and moving along.

Are you taking psyllium? This is a good option for some people - bulks up the stool and should improve your motility, but I would start slowly.

Also, you need to be drinking a lot of water and getting a good amount of exercise in to maintain your bowel's motility.

Last question - if you drink a lot of milk or take a calcium supplement, this could be part of the problem.
Posted 5/29/2015 2:11 PM (GMT 0)
In the meantime ask for an Rx for mesalamine enemas because they reach more area than the suppositories do. If your blood is red (not dark) then your bleeding is lower and nightly enemas are the best fix for that because oral meds rarely help that low an area and a topical mesalamine will help the most.

Constipation is a normal UC/UP symptom. I was originally diagnosed with UP and did not use the mesalamine enemas as prescribed and had both constipation and diarrhea and inflammation moved higher.
Posted 5/29/2015 3:02 PM (GMT 0)
Thanks guys!

Kazbern - I am based in the UK and had not heard of Miralax before so will inquire with my docs. Ispaghula is the name for psyllium that I had heard of and yes I had been taking that but then my doctor told me to stop as the combination with Movicol would have been too extreme! I have been drinking a lot of water per day and have upped my exercise regiime too recently to help with mobility. I do not take a calcium supplement but I do have milk every day so I will review that!

Imagardener2 - I tried enemas once before but had a really severe reaction to them (excruciating burning pain) so they switched me to the suppositories. The blood used to be a bright red but has gotten darker which is my concern as I know that could indicate a higher issue - I was not aware that constipation was a normal symptom for UP though as I hadn't ever experienced before (very much the opposite!) so that is reassuring to hear.

Thank you very much for your comments and feedback - I will be doing some more research tonight!
Posted 5/29/2015 4:28 PM (GMT 0)
As my UC inflammation cleared up constipation appeared every now and then. My latest c-scope showed very little inflammation and only in the lowest area and constipation (or C) is a symptom. I take a generic Citrucell (no luck with other forms of fiber), keep insoluble fiber mostly out of my diet and use mesalamine enema if blood appears.

My theory is that the inflammation keeps the poop from moving along to it's appointed spot and the enema smooths the way.That's what it feels like anyway.

Burning pain from enemas but no problem with suppositories indicates maybe the suspension fluid in the enema is a problem. Try to get some Rowasa-sf which has the sulfa removed (or sulfite I can never remember which). Really worth a try for UP.
Posted 5/29/2015 6:06 PM (GMT 0)
When was your c-scope?

What were the findings of your biopsies? I do hope you have a copy of the report.

If you can't do the mesalamine enemas, try the steroid ones.

You're having a flare....

Regarding the blood.....if it sits in the lower area, it will be darker, especially if it's mixed with mucus and suppository.

You need to have the results of the biopsies.

q
Posted 5/29/2015 6:08 PM (GMT 0)
Try coating your mesalamine suppositories with some strontium citrate! Also, take some magnesium citrate too!
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