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So here is a strange place to be stuck

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Ulcerative Colitis
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Posted 12/31/2014 6:47 AM (GMT -5)
Hi all,

I have tried and failed all prescriptions that were available in the UK (Just recently Humira, Simponi and Remicade/infliximab have been approved for Colitis maintenance if all other therapies have failed, so not tried biologics), so anyway here is my weird circumstance.

No mucous, no blood, no urgency and I am in a pattern of bowel movements of 1, 1, 1, 2, 1, 1, 1, 2.

So most days 1 bm then every 4th day 2, seems like i get backed up a little each day then have a clear out.

I achieved this through a renowned tcm practitioner in Brighton UK.

I am on 100mg azathioprine to keep the NHS happy but i was an aza for more than 18 months and would still flare again and again when pred woud stop.

I have had no pred now for more then 3 months and in fact got out of my last flare with blood only through the help of tcm.

So the obvious question is why am I posting;

The problem is i suffer from symptoms in the form of pain during bowel movement and residual pain after. The pain is mainly discomfort. I also have to pass wind by pushing it through (sorry to be graphic but you guys know the drill). So basically it feel like I have a problem in the rectum or even lower through the anus.

I have tried to investigate externally there is no signs of anything unusual. As far as I am able to see and touch internally I have very small what looks like blisters (guessing hemmies). When I have had these before it has been "extremely" painful to have a bm but not this time. It appears as though they are small but stubborn. I have tried suppositories both for colitis and the non prescription type creams, ointments and suppositories (Anusol) but it does not appear to make a difference to my symptoms.

Basically this is getting me down as i have suffered from this my longest flare for 2.5 years. I am very grateful that TCM has got me out of pred and in remission but these symptoms are driving me insane.

I get wind pain after work till i sleep. I have to push it all out and it is embarrassing and painful to say the least. then in the morning I have more pain to look forward to.

Finally, the other thing is although i have stopped losing weight these last 3 months what is frustrating is i cant put a single kilo or lb back on. I feel these last symptoms are stopping me from truly being at my best and keep dragging me down.

I am hoping some of you may be able to offer some advice based on similar experiences. I have had colitis for 20 years + now and never had what i would call unusual symptoms. I have been a straight flare is blolod remission is no blood kind of sufferer :-)

thanks in advance for your time on this and apologies for the length of my post
Posted 12/31/2014 9:31 AM (GMT -5)
So as I read it you want to fix is:
1) pain with BM passage and afterwards
2) Wind (gas) late in the day
3) gain weight back

My suggestions:
1) lower the amount of insoluble fiber you are eating and add soluble fiber in low amount, possibly take a fiber pill but this takes some trial and error as some pills cause problems (my gut hates psyllium for example but other people here love it). In general a wounded gut needs gentle foods to pass though it.
Pain says something is irritating it and it's probably in the rectal area which has a lot of nerves. Also adding good oils would move things through easier (see #3 below).

2) For me wind/gas relates to foods causing it. Could be sugar (fruit, sugar in drinks or food) or milk products (notorious for causing gas) or veggies such as broccoli, cabbage, etc. There are other causes but these are the biggies. Inulin, fructose, maltitol and anything ending in -ol which are sugar alcohols can also be causing it.

3) Try adding good oils to other foods: extra virgin olive oil (evoo), coconut oil and coconut milk added to smoothies, add cream to coffee/tea but not late in the day (milk causing gas). These add calories and are healthy for your gut. Make some carrot cake, zucchini bread and add cold butter to the slice when eating. Yum. I would stay away from sugar calories to add weight because sugar is inflammatory (a little is OK but it often leads to more, more sugar). Good chocolate could help add weight but you'd have to eat a LOT and then the overdose of sugar and caffeine would not be good.

Good luck conquering the last symptoms.
Posted 12/31/2014 9:48 AM (GMT -5)
thanks for your suggestions. tried the psyllium fiber for many months, different brands and type (pills, powder etc) have introduced them very slowly and persisted but waiting it out does not clear up extra symptoms from them. Pain in the gut and irritation basically.

I know what you mean about foods and gas. My problem is not the amount of gas, but the fact is basically I cant clear it like i normally could. It all appears to get block somewhere towards the end and I have to push it through with some pain!
Posted 12/31/2014 10:49 AM (GMT -5)
Have you tried a gluten free diet?

And what is TCM?
Posted 12/31/2014 10:12 PM (GMT -5)
TCM = traditional Chinese medicine

No advice but would you mind sharing the name of the TCM practitioner in Brighton?

Also, I guess you see a consultant at Royal Sussex? Any good? I need to find a new one because I loath Jackson at Princess Royal (15 miles north of Brighton). It's either Brighton or going back to one of the London teaching hospitals that I had a good experience with.
Posted 1/1/2015 5:29 AM (GMT -5)
I get exactly what you mean and it does seem to be at the end or rectum area. Mine feels like after I go to the bathroom a lingering dull ache like the rectum is trying to get back to where it was, not sure how to explain it and gas that builds up in stomach. I have been using gas x extra strenght and it seems that it does help with this it definitely helps with the gas anyway. Hope this helps.
Posted 1/1/2015 6:53 AM (GMT -5)
thanks for the suggestion ceecee600 re gas x i will give it a try.

Betty Lou I am actually based in Leicester so cant help you with local consultants in your area.

The reason I use the Brighton practitioner is that he is world renowned. He trained in China and actually travels the world and teaches TCM to practitioners specifically in the area of digestive disorders. It is slow but very controlled treatment and the website to look up is avicenna.co.uk His name is Mazin al Khafaji (not sure on spelling) he has encouraging testimonials but I was VERY skeptical but thought in the end what have i got to lose as i was running out of option.

I would recommend Mazin wholeheartedly but as we all know not all treatments are effective for all patients. Mazin is very confident and interestingly is also a master of chinese medicine for skin disorders which originate through autoimmune type issues.
Posted 1/1/2015 3:33 PM (GMT -5)
Ah! Thanks for the name. I'll look him up. Have been following other Chinese medicine threads with interest but really wouldn't know where to start. Sounds like I live in the right part of England to get some support!
Posted 1/6/2015 7:27 AM (GMT -5)
Betty,

I did the same as I have failed all drugs inculding immuno suppressants and was looking as the next step. Thankfully finally NHS have approved biologics we have another option but dont want to go to them to save that option as long as i can.

I was also confused on the merits of chinese herbal meds. The thing with Mazin is I have the comfort of knowing that if it fails it wont be because of lack of expertise. Also with TCM the mix of herbs have to change to your changing symptoms and general health and therefore I would rather someone who knows what they are doing takes you under care instead of my normal throw it to the wall and see what sticks methodology!
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