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Ulcerative Colitis
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Posted 6/26/2020 10:41 AM (GMT 0)
Hi Andrina I'm sorry to hear you have to suffer so much sad I hope something like stelara could be an option.
Maybe its a long way in the future but some hospitals in europe have been having luck with stem cell transplants for highly refractory crohn's disease. Basically they give you chemotherapy to re-set your immune system. It is risky because you come out with no resistance to infections and have to stay in an isolation ward for some time, and some trials did result in patient fatalities. On the other hand, around 70% of patients could go medication free after they had recovered. They had good results in Belgium and the Netherlands. Other countries fared less well. I think it would take years before such treatments could become more mainstream (or maybe they are abandoned due to safety risk) but I'm just putting this out there to show there is work being done to help the difficult cases (I also read in dutch a review by a patient whose crohns had been so severe that she couldn't eat any more due to inflammation in her mouth and oesophagus. She said the treatment was hard but worth it)
https://pubmed.ncbi.nlm.nih.gov/29788233/
Best wishes
Posted 6/26/2020 12:58 PM (GMT 0)
Stem cell treatment isn't an option for me. Also I'm no longer a German citizen so going back to Europe is also out. Sorry if all this sounds negative and dismissive.

I seem to be OK on probiotics for now. I take them 4 times a day. I also need to dilate otherwise my anus becomes too narrow and I can't pass gas. The build-up is extremely painful.
Posted 7/12/2020 12:51 AM (GMT 0)
I was doing a little better and now I'm struggling again. My eyes are swollen from crying all day.
Posted 7/12/2020 5:04 AM (GMT 0)
Tight anus is a problem some male babies have, which I heard about from a colleague whose 2nd son had it. The treatment was digital stretching massage by nurse + some oil lube. My colleague said that it gets DXed because the gas build-up causes colic pain-- similar problem to yours. Maybe you could try a bit of olive oil application there; it shouldn't hurt because gyns recommend it as an option for vag lubrication. Also, I read about a midwife in New Mexico using it successfully to stretch perineum tissue of patients during labor so that they could avoid episiotomy. Problems in the nether regions can be very depressing to adults, but try not to despair. You might be able to adapt one of the Rx med's anal applicators to insert some natural lube on a schedule you figure out that would enable you to safely eliminate constriction there. / Old Hat (39 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/12/2020 3:51 PM (GMT 0)
I dilate myself and it helps I just have to do it every day. That's not the problem anymore. Somehow I got inflamed again and I don't know what I did wrong. I'm able to release the gas so it's not building up so I hope I recover soon and don't make the mistake that I don't know I did. Maybe some food that affected me. I'm continuing being on probiotics as well.
Posted 7/12/2020 7:47 PM (GMT 0)
Are you working with a gi to find a long-term solution for the pouchitis? I know taking meds daily isn't the best but it's better than having things remain unpredictable. I am really sorry you're down. I hope you are feeling better soon.
Posted 7/12/2020 10:56 PM (GMT 0)
No I haven't called them except the billing department because I keep having issues and keep being threatened with collections even though I made payments it leaves a sour taste in my mouth right now
Posted 7/13/2020 1:50 AM (GMT 0)
I personally would just go see someone else and catch them up on my situation. I am sure a gi could pick up where you need to and provide some options.
Posted 7/15/2020 1:55 AM (GMT 0)
I like my gi and I like how logical he approaches things I'm just not ready for biologicals to be honest with you
Posted 7/15/2020 2:58 AM (GMT 0)
I can understand that. I hope you find a way to make things work without.
Posted 7/15/2020 3:05 AM (GMT 0)

notsosicklygirl said...
I can understand that. I hope you find a way to make things work without.


He already said he wants to put me on biologics if cipro fails and things so I know I can come to him and request it. But I'm hoping it will get better. Isn't the first year the hardest anyways or am I suffering more than a normal 1st year j-poucher?
Posted 7/15/2020 5:41 AM (GMT 0)
The first year is definitely the hardest but having recurrent pouchitis puts you in a category where you have had more trouble than the majority. Many people regret not having surgery sooner because they find things to be easier and more predictable afterwards... You've voiced that you feel the opposite.
Posted 7/15/2020 6:07 AM (GMT 0)
Today I feel like things are manageable again. It always fluctuates.
Posted 7/17/2020 1:54 AM (GMT 0)
Today I was able to pass gas over the toilet. It wasn't possible in the last couple of weeks. I'm still trying to figure out why. I've been dilating every day.
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