Too long to be diagnosed

[Armelle]

Hello,

I have suffered for years from constipation and exhaustion. I was diagnosed with IBS. I had many tests including sigmoidoscopies and colonoscopies. All clear. I was sent for biofeedback and it helped a bit. I also spent a fortune on remedies, naturopaths, homeopaths and nutritionists. All a waste of time and money.
Then last June i had another sigmoidoscopy because I had mucus and rectal bleeding. That was new. Well it started the October before. At the time my gp gave me buscopan!! afterbthe sigmoidoscopy they gave me a leaflet on ulcerative colitis and that's it. No nurse, advice, medication nothing. I went to see consultant last October who wanted to check with another colonoscopy which I had on Monday. Inflammation probably UC and sent me home with pentasa (4000 a day for a month). I am actually relieved to have a diagnostic after years of thinking it was all in my head. The trouble is I had to take 2 weeks off as I feel so weak and my lower back is really sore. I am female, 62 and I reach French in 3 primary schools. I still have doubt about the diagnostic as I've read diarrhoea is the main symptom and it mostly starts between the ages of 15 to 25. Also a question which many people probably asked you before. This is my 4th day on pentasa. When will it start kicking in? I need to work. I also help my daughter look after her 7 year old twins. Her husband left her on Christmas Eve but that is another story. Thanks for reading. I have just joined this group. I didn't know it existed before this week.

 

[ronroush7]

Hi. I think the disease doesn't act the same way with everyone. I don't know how long it takes for Pentasa to start working. It only hits the surface of the disease.

 

[scottsma]

Hello and welcome,glad you found us.Your story sounds very similar to mine.I was diagnosed aged 56.I had bleeding and mucus and urgency as first symptoms and after a months wait went for sigmoidoscopy and biopsies.Dx'd with proctitis and prescribed Asacol suppositories which after 4 mnths of daily blood,cleared it up in about a week.I then used the supps.as maintenance.My main problem is urgency with constipation thrown in occasionally for good measure,and last year I was dx'd with crohns colitis as "it" had travelled higher up the colon.Your meds should start making a difference after a week or so,but we're all different in as much as what works for some has no effect for others.I would enquire at you GIs office if there is and IBD nurse at your hospital,who they could put you in touch with.they are invaluable if youe'r worried or need to ask a question.But please don't hesitate to ask for info.on here.You'll get as much help and support as we can give you.I hope you begin to feel better soon.

 

[ronroush7]

Amen

 

[Armelle]

Hello Scottman and thank you so much for your reply. It really encouraged me. I was convinced I was reacting badly to pentasa but it looks like I was having a panic attack with the worry of it all. I'll start the pentasa again on Monday on a lower dose to start with. I am not quite sure how to use this site properly yet and i do hope you get this message. Thank you.

 

[scottsma]

Hello again,we all know how stressful this disease is and also how lonely.I'd never heard of it,nor had any of my family or friends.It's difficult at times for others to understand what having IBD means for us.Now that you're on meds. it will be trial and error until you find something that works for you.Give it time,and if you feel it's not doing it's job then PLEASE go back to the docs.and tell them.You're on a low grade med.now but there are others to try.But don't be in a hurry to upgrade,so to speak.Take time to look round the site it's very helpful and reassuring.And don't be afraid to ask questions.Nothings taboo or silly.Have a good day.

 

[Armelle]

Well I went back to my GP on Friday and he was so helpful. His own son suffers from UC. He told me to start slowly with the Pentasa so I took one this morning. My main problem is not pain. I don't have any pain but I am constipated and have been for years. I was sent to do Biofeedback through my hospital and it does help. But the tiredness is debilitating. I am always exhausted. I sleep for about 10 hours a night and I wake up still shattered. I am off this week but I dreading going back to work next Monday. I will also contact the UC nurse at the hospital. This site is so helpful and you are too. My friends are fed up listening to me moaning about my bowels...
Have a good day too.

 

[scottsma]

I'm glad your GP is sympathetic,many aren't.Try to take it easy while you have time off.It can't be easy holding down a job.I couldn't do it.I absolutely hate being constipated,and I fear IT more than the opposite.Please keep us updated.

PS. I find 6 dried prunes daily a good antidote to constipation and a bowl of porridge daily.But I expect you've tried all those type of things.Also Pysillium husks from Holland and Barret.

 

[my little penguin]

Ds is constipated as part of his Crohns and needs miralax (movicol) daily.
Prunes , juice high fiber gave him severe pain and never moved much .
So please proceed slowly if you try the prunes or fiber route.

 

[Lady Organic]

hello Armelle,
if you are worried with pill version of Pentasa, you can get the topical (rectal use) of the same medication if your disease is only located in the rectum or very near by. That what I have been using. When I was first diagnosed in 2001 i was not offered the enemas nor suppositories, but I wish I had been... when we have choice of topical treatment versus pill systemic treatment, i prefer the first option. There is the 4g or 2 g Pentasa enemas which can be used for relapse and to maintain remission if remission is acheived with the medication. if this medication fails, there is also cortisone foam enemas or suppositories that can be used or combined with the pentasa. one in the morning and the other at night. but that is only if the disease is located very low in the colon.
wishing you well.

 

[Armelle]

I was reading the results of my colonoscopy last Monday and it says : UC? The hospital haven't got the results of the biopsies yet. I might not have it after all. I live in hope.

 

[scottsma]

I expect you will get an appointment to discuss your results with your consultant.It takes an age in the UK to get anything that's not an emergency,sorted. UC is just as serious as crohns.But there are different levels of seriousness.It's a good idea to make a list to take to the hospital.ie: symptoms,length of time,pain levels,diet,fatigue and the meds.you are now using.It's easy to be overwhelmed and forget to mention things that have been bothering you.

 

[Armelle]

The reason I think I might not have it is because I've had problems for years put down to IBS. The blood and mucus only started in October 2015. Anyway, it is no good speculating until I have the results of the biopsies. A UC nurse will contact after the results to discuss the way forward. I have started to take Pentasa again with no side effects so far. I also think that UC makes you slim. Well I could lose half a stone and I have a good appetite.
Thanks for your input again. I am keeping a diary of symptoms etc..

 

[Lady Organic]

sometimes GIs hesitate between UC and crohn's colitis or even indeterminate colitis during colonoscopy. Its sometimes difficult to make a clear diagnosis. 15 years of Inflammatory bowel disease for me, 3 different GI have seen my insides on multiple occasions and tones of biopsies have never concluded which disease I have. So I am still indeterminate colitis. Whether you have UC or another one, you seem to have an inflammatory bowel disease and treatments are basically the same at this starting point. If a GI prescribed Pentasa and gave you a leaflet of UC, it is because he saw ulcers and inflammation in your colon, which were more typical of UC. This is what I have too, most of the time, a UC pattern of disease. It is not IBS you are suffering right now. It is possible you had a very mild UC the years before or also possible you had IBS too prior to start IBD. It is possible to have both condition at the same time as well.

 

[Armelle]

Thanks for your reply. I think you are right. Can you tell me if the medication help with low energy and tiredness? This is my main problem and I feel overwhelmed by work. I am going back Monday and as I teach in 3 primary schools and the pace is relentless. I only work 3 and a half days bt I do the same teaching hours as a full time teacher. It's annoying when people call me a part timer. I am also going to have an operation to remove a cyst on my ovary shortly. I am actually looking forward to having a couple of weeks off for that. Surely that's not right. I used to be so energetic and practised yoga regularly. I now feel like a sloth and it's depressing.

 

[Lady Organic]

The disease itself can cause fatigue. It has never been so much my case (or I just dont remember what it was to be healthy...), but a lot of people experience fatigue when having a flare. If the medication brings you to remission, there a good chance that fatigue could disappear. You can also ask your dr upon next visit for a Vit D and vitamin B 12 test in your next blood report. A deficiency of B12 can cause fatigue in some individuals, and we, people with IBD are more at risk to develop a deficiency of this vitamin...
Of course, if you work 12 hours a day, that could be exhausting too. When I was first diagnosed, I decided to change my lilfestyle so it would be more relaxed. Stress does not cause IBD, but it can be a triggering factor in some individuals. In my opinion, its really best to manage it well or to avoid it as much as possible.