Crohn's Disease Forum » Your Story » Possible UC, still waiting for diagnosis


 
12-13-2017, 10:05 AM   #1
erk
 
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Possible UC, still waiting for diagnosis

Hi all, first off really pleased to find what looks like an active forum for IBD, looking forward to reading and learning

Around mid October I noticed blood in my stool, or just wiping and having bright red tissue, along with a few instances of becoming so painfully bloated I looked like I was pregnant. One particularly bad day I almost couldn't get into my motorcycle trousers to ride home, my tummy was so big it was pushing into the tank, it was nasty.

After several visits to the doctors where they realised the bleeding wasn't going away, I had a colonoscopy - which really wasn't as bad as I was expecting, doctors and nurses were wonderful (and the painkillers were amazing!), the prep on the other hand was abysmal as I'm sure many people here can relate.

The bleeding has gotten to the point where I am losing blood every time I go to the toilet. Often I go to the toilet just to release blood and white lumps. I was surprised when my blood and stool tests came back OK as I expected to have some sort of deficiency.

They suspect I have UC and the photos from my colonoscopy show inflammation in the rectum, this was a few weeks ago and I'm just feeling in a strange limbo place where I'm still waiting to hear for sure what I have or receive any treatment or medication, or any advice from a medical professional. (All I've had is advice on the colonoscopy itself, nothing going forward)

I've been trying my best to be pro-active in any way I can, but it feels as though there isn't much I can do at this stage.

I've been keeping a food diary which I think has identified gluten as an issue, so I'm attempting to be gluten free. Overall it seems to have helped, I've not had any more huge bloating, but still having the blood loss/frequent toilet visits. The family dog died recently and I ate like crap when that happened which probably didn't help!

I've made some other changes to my diet, I'm taking Bio-Kult probiotics every day, including making my own kefir, I've been taking a seaweed capsule which contains iron as I had been pre-empting an iron deficiency. I'm also consuming tumeric capsules in the morning as an anti-inflammatory.

I have learned recently I have a cousin on my mothers side with Crohn's disease, and a cousin on my fathers side with UC. I'm surprised to be half way into December now and not much wiser than when I first noticed symptoms, really hoping to see a specialist soon.
12-13-2017, 10:52 AM   #2
scottsma
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Hello and welcome to the forum.Unfortunately we have to be patient with the NHS,especially now-a-days.I think I waited 2 months for my results and that was 16 years ago.The good news is that if it was urgent,they are very good at getting it sorted asap.You have the same symptoms as I had and I was dx'd with proctitis which is inflammation of the rectum.I was prescribed suppositories and the bleeding cleared up within a week.I continued to use them as maintenance for a good while until a test showed I had Crohn's colitis which is inflammation of the colon.Through choice,I don't take any meds except prescribed loperamide for diarrhea and fibrogel for occasional constipation and Tramadol for pain.You seem to be clued up with your diet etc. Please let's know how things are.Your post will help others who are new to all this.Keep well over the festivities.
12-13-2017, 11:49 AM   #3
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Thanks for the welcome scottsma very true about the NHS, I think everyone has been really good with me, and I'm feeling very grateful that we have the facilities, but it is unfortunate when things take a long time. In fact you reminded me I have a thank-you card to post to the endoscopy unit.
My cousin with UC told me she has been in remission for 12 years, which from reading here on the forum and other peoples stories is incredible. Hope you are well over winter as well
12-13-2017, 05:28 PM   #4
ronroush7
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Hi. I hope you get answers soon.
12-14-2017, 06:00 AM   #5
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erk,there are quite a few of us in remission.Some on here have had thirty years before a relapse.When you get "used" to things you will start to relax and recognise what's going on inside.Of course there a many poor souls who never get a break and are continuously in a flare.Crohnie mantre....everybodies different....Symptoms,meds,diet etc.
12-15-2017, 05:47 AM   #6
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Yeah the variation in IBD seems huge, I had been reading guides from Crohns & Colitis UK, I think they're good but at the same time quite vague because symptoms and issues vary so wildly between different people.
It's good to have the range of personal experiences here though, it's reassuring to me finding other people going through something similar. Especially at the moment I feel like I'm just killing time till I can see a specialist!
01-01-2018, 06:36 AM   #7
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Really pleased yesterday as I've received a letter to follow on from my colonoscopy, they have recommended Salofalk, as well as booked a follow up appointment in March to see how I'm getting on. I just need to see my GP to pick up the medication.
This still hasn't given me a diagnosis but reading that this is used to treat IBD seems like this is the case.
It will be a relief if this can stop the bleeding which has been on going for 3 months now, feeling hopeful.
01-01-2018, 08:12 AM   #8
my little penguin
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Salofalk Is a 5-asa and is a extremely mild drug
That said it treats the top layer of the intestine and a lot of folks with UC see a improvement if they are going to within 30 days. If it isnít working within 30 days
It probably wonít work.
There are other variations of 5-asa if you have too many side effects from the older version

Salofalk Is not recommended as a monotherapy if you have Crohns
Since Crohns affects the entire thickness of the intestine not just the top layer.

Did they do an MRE (imaging) this confirm the small intestine is not involved as well ?
Or an upper endoscopy?
Both are standard to make sure that inflammation isnít occurring near the top

Glad you have a treatment plan and hopefully things will improve quickly

If 5-asa donít work there is always methotrexate as a step up
Methotrexate can take 8-12 weeks to become effective

Did they give you steriods to calm the inflammation down so the 5-aza can take over ?
5-aza by itself typically isnít enough to calm down the inflammation
Steriods are used woth it to get things under control
Then 5-asa are used to keep it there
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01-01-2018, 08:45 AM   #9
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Thanks for all that info, really appreciated
Yes my letter says they recommend Salofalk for 2 to 4 weeks to see if this improves my symptoms. From the colonoscopy and biopsy they said the inflammation is limited to my rectum, beyond this it looked normal. I haven't had an upper endoscopy or MRE to see if inflammation is elsewhere, from what I've read because the blood I'm losing is bright red this indicates my symptoms probably aren't occurring further up, it seems like the colonoscopy confirms that.

It doesn't mention steroids in my letter, but as I have to meet with my GP for it I will enquire about that.
01-01-2018, 08:51 AM   #10
my little penguin
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For reference
My sonís first colonoscopy looked almost entirely normal
They took biopsies through out upper and lower which showed inflammation even though visually it wasnít able to be seen
And the MRE confirmed thickening of the terminal ileum


Really hope the 5-asa work well for you
01-02-2018, 06:29 AM   #11
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Turns out my GP can't actually prescribe me the medication recommended (something to do with this being a specialist prescription that they can't take responsibility for?) so they've written back to gastroenterology to ask if they can provide the prescription. Rang the hospital and the specialist wasn't in today so they've asked me to try again tomorrow.
01-09-2018, 10:29 AM   #12
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Bit frustrated now. The specialist was taken aback that the GP wouldn't write the prescription, as stated Salofalk is mild and doesn't require the specialist to write the prescription, they said it's the first time a GP has refused. I've phoned the specialist and GP back and forth to get them to fax each other instead of waiting for the snail mail. I was told last week the specialist would write the prescription and they'll ring me when it's ready.

Rang the specialist again today and it seemed I was explaining the situation from square 1 again, they will ring me back tomorrow. Just picking up a prescription should be the easy part surely!
01-09-2018, 01:46 PM   #13
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Usually the consultant gives me the medications, then writes to gp to issue further prescriptions, or you call the ibd line for aza etc.
They should have your biopsy results soon too.
You may find that gp is very very reluctant to do much for you, as youre under the gi.
Well, thats me experience in the south west anyway.
Good luck
01-11-2018, 05:06 AM   #14
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I got given Pentasa yesterday instead of Salofalk, but sounds like this is just a different brand and with the same active ingredient Mesalazine.
From this morning the blood has turned extremely dark, it almost looks black. From what I've read this is normal after using the suppositories, just happy to be getting going with something
01-24-2018, 09:15 AM   #15
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Thought it might be useful even just for my own reference to update here.
Been on pentasa for 2 weeks now and it's made a massive difference. No more blood loss, or mucus, and for the most part I'm back to 1-3 BM's a day instead of visiting the loo 15+ times and having to run for it.

The doctors letter said "2 to 4 weeks" to take the pentasa, I was considering trying to stop it and see if symptoms return now I've done 2 weeks, but I have to go away with work tomorrow and don't want to take the risk, so I think I'll just continue for the full 4 weeks as it seems to be working effectively on all my symptoms.
01-24-2018, 10:32 AM   #16
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Thought it might be useful even just for my own reference to update here.
Been on pentasa for 2 weeks now and it's made a massive difference. No more blood loss, or mucus, and for the most part I'm back to 1-3 BM's a day instead of visiting the loo 15+ times and having to run for it.

The doctors letter said "2 to 4 weeks" to take the pentasa, I was considering trying to stop it and see if symptoms return now I've done 2 weeks, but I have to go away with work tomorrow and don't want to take the risk, so I think I'll just continue for the full 4 weeks as it seems to be working effectively on all my symptoms.
Erk,glad you are doing so much better.

01-24-2018, 04:19 PM   #17
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Hey erk, I'm glad you're feeling better
01-24-2018, 04:39 PM   #18
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Pleased you feel better!
02-15-2018, 02:51 PM   #19
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Thanks so much everyone
Having been off the suppositories for about 3 or 4 days now, my previous symptoms haven't returned, however some days I'm having the most dreadful flatulence, I can't help but find it comical!
On my train home from work today, the previous train had been cancelled so there were probably twice the number of passengers, lots standing (including myself), anyway I start reading my book and started producing the most ungodly stench. All silent but deadly, continuing for the duration of the journey and when I got home. I felt so bad for the other passengers, I stood myself by the doors but I don't think it made much difference!

Is this my body getting used to not having the suppositories any more?
02-15-2018, 06:14 PM   #20
ronroush7
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Not sure. Have you tried Gas-X or Phazyme?
02-17-2018, 06:10 PM   #21
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Is Mesalazine a maintenance drug to keep the inflammation from getting worse and a person takes it every day..... or is it taken just for short periods of time during a flare-up ? I have had one good GI prescribe Lialda for me to take every day, another GI tell me that I do not need to take it at all and my third GI does not seem to care one way or another. I do not want to risk my colon health getting worse. I am going to talk to my GI soon. Lynda.
02-17-2018, 06:14 PM   #22
ronroush7
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Is Mesalazine a maintenance drug to keep the inflammation from getting worse and a person takes it every day..... or is it taken just for short periods of time during a flare-up ? I have had one good GI prescribe Lialda for me to take every day, another GI tell me that I do not need to take it at all and my third GI does not seem to care one way or another. I do not want to risk my colon health getting worse. I am going to talk to my GI soon. Lynda.
It only hits the surface of the disease. I have been on Lialda for years.

02-17-2018, 06:44 PM   #23
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There is little evidence of 5-ASA/Mesalazine preparations to be superior to placebo for maintenance of medically-induced remission according to latest double blinded placebo studies.
But there is few side effects so you may take it during times of remission if you think it helps you. Asacol and Pentasa cause interference with the absorption of folate, so you may need supplementing with folate if you take it long term.
During a flare-up you would need something stronger, usually prednisone or budesonide.

Hope that helps!
02-17-2018, 06:47 PM   #24
Lynda Lynda
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Thank You Ron and Glockola.
03-22-2018, 09:53 AM   #25
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So we had some bad snow here in the UK recently during which I was meant to have my follow up appointment with the GI, sadly I had to cancel as I couldn't travel to the hospital due to the snow, all the trains were cancelled etc.
They wrote to me and my new appointment isn't until July 4th! At the time I was just a bit disappointed as I haven't spoken to a specialist about my issues and I'd just like to talk to someone about what's happening (also as I'm still undiagnosed), but I wasn't too concerned as since taking the suppositories I've been completely fine. However over the last week symptoms have begun to return, loss of blood, mucous, having to go urgently.
I think I will see if I can ring the specialist in case I can get another course of Pentasa or similar. We are finally getting nicer weather here and it's that time where I'd be looking to take a holiday and get out on the motorbike again, and if this becomes as bad as it was I'm just not sure my ambitions will be possible.

It's such a shame things take so long here. I can't believe just for a talk with the GI it will take 4 months
03-22-2018, 10:03 AM   #26
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Can you call the doctor"s office and ask if there are any cancellations if they could fit you in sooner?
03-22-2018, 10:10 AM   #27
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So we had some bad snow here in the UK recently during which I was meant to have my follow up appointment with the GI, sadly I had to cancel as I couldn't travel to the hospital due to the snow, all the trains were cancelled etc.
They wrote to me and my new appointment isn't until July 4th! At the time I was just a bit disappointed as I haven't spoken to a specialist about my issues and I'd just like to talk to someone about what's happening (also as I'm still undiagnosed), but I wasn't too concerned as since taking the suppositories I've been completely fine. However over the last week symptoms have begun to return, loss of blood, mucous, having to go urgently.
I think I will see if I can ring the specialist in case I can get another course of Pentasa or similar. We are finally getting nicer weather here and it's that time where I'd be looking to take a holiday and get out on the motorbike again, and if this becomes as bad as it was I'm just not sure my ambitions will be possible.

It's such a shame things take so long here. I can't believe just for a talk with the GI it will take 4 months
Call the Ibd nurse,if they donít call back keep leaving a voicemail as they will do eventually.
They can review you over the phone and issue more medication and also speak with the gi.
Ours also do face to face clinics, so deffo worth annoying the nurses 🤭
The snow has been a right pain in the rear (ha)
Hope you feel a bit better soon xx
03-22-2018, 10:22 AM   #28
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Thanks folks, I called them just now to explain about symptoms returning and one of them is going to ring me back on Monday. It's funny I get so concerned about ringing the doctors as I hate to feel like I'm pestering them or wasting time but I guess you have to push these things if something needs doing
04-18-2018, 10:47 AM   #29
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So today was my first appointment with the GI, it was quite concise and much information I'd already discovered having been on this forum, which I think proves how useful it is here - so thank you all everyone for sharing your knowledge with me

It seems they can't say 100%, but with my symptoms and that I responded positively to my earlier suppositories strongly suggests ulcerative colitis, with the area of inflammation being proctitis.

I had worsened quite a lot these past few days with about 16 BM's a day progressively getting more watery, urgent, and bad stomach pain. I haven't eating much and been drinking loads of water as I'm working, and had been travelling with work, in various situations where I can't get to toilets quickly, including a train without toilet roll, lesson learned for me it's probably handy to always have some tissue to hand!

I've been prescribed 800mg octasa tablets and another prescription of the pentasa suppositories in case it gets worse, very handy for me as I'm not based near the hospital and my nearer GP isn't comfortable writing these prescriptions for me. Very relieved to get my hands on some medication that I can start taking today
04-18-2018, 10:53 AM   #30
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Is say Ďexcellent newsí but sounds wrong😳
But Iím
Glad that youíve gotten the medications, and yes... the gp wonít do much without the gi say so.
Hopefully they will help you.
Maybe take more than the 1 pack of tissues... just in case😜
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