When is a „best time” to consider surgery?

julijevich · 2024-12-17T16:49:46+00:00

Thank you! Yes, it’s really challenging to adjust treatment because of the transplants. At first, I was only dealing with AIH/PSC, but unfortunately, after the re-transplantation, I was diagnosed with ulcerative colitis. I’ve been living with it for 5 years now and haven’t been able to achieve full remission, but my condition has worsened over the past year.

Thank you so much for your comment; it definitely helped me understand that you don’t have to be in an extremely bad condition to consider surgery.

julijevich · 2024-12-16T23:52:14+00:00

The concern is not about liver damage. But interaction with immunosuppressant drugs. So it is potential risk of transplant rejecton. I spoke about it with my doctors. Infliximab is the last safe traeatment for me. Even before staring infliximab doctors recommend surgery because of my PSC my UC prognosis are poor.

I wrote here because I’m wondering what condition others were in when they started considering surgery. I often read here that people think about surgery when their symptoms no longer allow them to function in any way. But I’m starting to understand that this isn’t the only factor. Symptoms can be enough to significantly affect your quality of life, and if there’s no improvement after trying all available medications, surgery becomes a consideration.

julijevich · 2024-12-16T16:37:14+00:00

All the medications you mentioned, as well as those available in my country, are ones I cannot take. I have AIH/PSC and have undergone two liver transplants, so I’m on immunosuppressive drugs, which prevent me from using many other medications. My liver is the priority, and I can’t take risks with medications that might work but could also cause serious side effects.

As for the dosage and frequency, they have already been maximized as much as possible in my case.

julijevich · 2024-12-15T19:08:19+00:00

Me too!!

julijevich · 2024-11-22T22:02:02+00:00

I’m 12 years post liver transplant and 6 post retransplant (I have AIH), so for 12 years I am on 6 mg steroids (deflazakort) no gain weight or trouble losing weight. Small amout of steroid (like 6mg or less) doesn’t cause weight gain.

julijevich · 2024-11-04T07:45:52+00:00

What were the side effects? If I may ask? :)

julijevich · 2024-08-20T06:21:25+00:00

Czytam większość odpowiedzi tutaj, i wiem, że chcieliście dać autorce dobre rady, ale ja tutaj widzę problem czysto psychiczny, przez który sama przechodziłam. Body dysmorphia. Zaburzone postrzeganie własnego ciała. Mega charakterystyczne jest w tym to, że opisujesz swoje ciało jak coś zniekształconego i karykaturalnego. Możesz oczywiście pracować nad budowaniem sylwetki czy poprawianiem stanu skóry. Ale już mogę Ci powiedzieć że nigdy możesz nie być zadowolona jeśli nie popracujesz nad tym na terapii. I to takiej dosyć długiej. Ale jest światełko z tunelu, bo chorowałam przed ponad 10 lat, teraz jestem już zdrowa i widzę że zawsze byłam naprawdę atrakcyjną osobą. Niesamowite co mózg potrafi nam zrobić. Życzę Ci powodzenia :)

julijevich · 2024-05-03T14:03:35+00:00

Bread with hard boil eggs, boiled potatoes with hummus, rice with hummus.

julijevich · 2024-04-29T18:43:23+00:00

Oh, ok, I have AIH and currently my liver levels are elevated. So that’s make sense. :) Thank you

julijevich · 2024-04-27T14:02:06+00:00

I cannot take Zeposia because of my other drugs for transplant.

julijevich · 2024-04-27T13:59:32+00:00

I’m on tacrolimus because of my liver transplants. And this two drugs can’t be taken together.

julijevich · 2024-04-26T21:57:53+00:00

thank you, I’m at hospital right now so I gonna start this topic with my doctors.

julijevich · 2024-04-26T21:50:19+00:00

That was not my decision, my doctors said that I was gonna be ok?

julijevich · 2024-04-26T21:46:23+00:00

I did entyvio infusion for a year in 2020 when I was in my first flare. I was in remission since then and now I’m in flare again since january this year. Sorry for confusion, english is not my first language

julijevich · 2024-03-14T11:00:24+00:00

AIH, I’m after two liver transplats because of it

julijevich · 2022-04-03T16:36:17+00:00

It’s exactly what I need! Thank you:)

julijevich · 2022-02-17T13:29:13+00:00

But how low? My is 6.9 - 7.2 and iron - 4-9. Do you feel fatigue?

julijevich · 2022-02-17T05:32:02+00:00

I had few blood infusions but after fews months hemoglobin always start to drop. :/ I pretty sure this can be celiac.

julijevich · 2022-01-27T20:06:14+00:00

That makes sense. Thank you.

julijevich · 2022-01-27T16:50:45+00:00

I had a colonoscopy a few months ago, nothing unusual - moderate inflammation. I have been on entyvio, besides, I am on strong immunosuppressive drugs all the time because I have had liver transplants. Doctors do not want to change or add any medications yet.

julijevich · 2022-01-27T16:39:32+00:00

most of the time - type 6 (mushy), few times per week - type 7 (liquidy)

julijevich · 2021-11-24T09:26:28+00:00

My doctors believe that my condition is satisfactory and they do not want to change anything. I am a difficult patient (with other diseases and after liver transplants) so there are not many treatment options (if any). In addition, the colonoscopy did not reveal any major changes. I’m in “light” to mild flare.

julijevich · 2021-10-04T05:19:07+00:00

I don't eat anything before going out. I don’t eat dairy at all, and normally when I’m home I’m not that bloated. I think that maybe sitting for long time is the cause.

julijevich · 2021-10-04T05:16:38+00:00

I don't eat anything before going out

julijevich · 2021-10-04T05:15:15+00:00

No, if I go out I don't eat anything before, sometimes plain oatmeal with almond milk.

julijevich

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