Trying to Conceive with Crohns flare up

[BestyRocks]

Hi,

I am new to the forum and was wondering if anyone tried to Conceive while crohn’s is not completely in remission. My doctor keeps advising me against it for past 3 years and my crohns is not getting better even after switching from Humira to Stelara to now Remicade. We want to TTC badly but also unsure and a bit scared of all the uncertainty crohns brings.

 

[Pangolin]

Some people say their Crohn's gets better when pregnant, and others say it gets worse. Active Crohn's would surely make pregnancy riskier, but some people do it. Maybe you could find a way to quickly get the Crohn's more under control? If none of those medicines are working, you still have some options:

Skyrizi is new and many people are having great results with it. It should also be safer than Humira or Remicade.

EEN (an all-formula diet) can bring down inflammation fast (and provide good nutrition, too). This should be a serious consideration while pregnant in order to keep inflammation to a minimum.

Some people do much better after surgery, especially if there's a particularly problematic area.

 

[BestyRocks]

Thank you for the reply. Never heard of Skyrizi. Is this a new biologic or an oral medication ? Do you mean get surgery for inflammation even if there is no blockage? I read that people who had surgery might need multiple follow up surgeries later. So was a bit apprehensive on surgery.

 

[Scipio]

Thank you for the reply. Never heard of Skyrizi. Is this a new biologic or an oral medication ?

Skyrizi is a biologic. It tamps down the over-active immune system by blocking the action of the protein IL-23. This is a protein that stimulates certain white blood cells to proliferate and become active.

 

[Lisa]

I became pregnant shortly after a hospitalization for a flare up - and then was pretty danged healthy for the duration of my pregnancy (aside from the fistulas I already had)...I did flare some after I had my daughter, but started Remicade about 6 months after that and have been on it since with very good results. (Daughter turns 18 next month!!)

 

[BestyRocks]

Great to hear you had healthy pregnancy Lisa. That gives hope. It is just getting a bit hard to keep endlessly waiting on getting to remission to plan family. Thank you for sharing your experience.

 

[Pangolin]

Do you mean get surgery for inflammation even if there is no blockage? I read that people who had surgery might need multiple follow up surgeries later. So was a bit apprehensive on surgery.

In general you want to preserve as much intestine as possible, and surgery after surgery removing more and more is definitely a problem. However, some people have a small region that's just not responding to any medicine, and there's just nothing that can be done about it except to take it out. This might show up as a stricture on an MRI, but it does not necessarily cause a blockage. Sometimes people can have one surgery and then have years of remission, so it should be a consideration.

 

[BestyRocks]

In general you want to preserve as much intestine as possible, and surgery after surgery removing more and more is definitely a problem. However, some people have a small region that's just not responding to any medicine, and there's just nothing that can be done about it except to take it out. This might show up as a stricture on an MRI, but it does not necessarily cause a blockage. Sometimes people can have one surgery and then have years of remission, so it should be a consideration.

My crohns is in small intestine that is hard to reach for any colonoscopy and only way they test me is through MRI Enterography. I will ask the doctor about it in my next check up if surgery can make it better. I do have a structure but it never caused any severe blockage until now. Some years of remission definitely sounds exciting to me compared to non working medication.

 

[Pangolin]

Ok here's my son's experience with surgery:

He had a stricture at the end of his small intestine. It was there for years, and the biologics weren't able to touch it--if anything, it was slowly getting worse.

So he had a surgery and had that short section of intestine removed, something like 6 to 10 cm. Inflammation went way down, but EEN was critical during the post-surgery period to help with the recovery. Despite that, he still had some inflammation left, so he started Stelara, which was super effective. Now 2.5 years after surgery and after 2 years of stelara he has no sign of inflammation on any test.

 

[BestyRocks]

Ok here's my son's experience with surgery:

He had a stricture at the end of his small intestine. It was there for years, and the biologics weren't able to touch it--if anything, it was slowly getting worse.

So he had a surgery and had that short section of intestine removed, something like 6 to 10 cm. Inflammation went way down, but EEN was critical during the post-surgery period to help with the recovery. Despite that, he still had some inflammation left, so he started Stelara, which was super effective. Now 2.5 years after surgery and after 2 years of stelara he has no sign of inflammation on any test.

That’s great to hear he has no inflammation anymore. Mine is middle and last of small intenstine(Jejunum and ileum). How long was he put on EEN diet after surgery?

 

[Pangolin]

Technically he was told he could have a normal diet almost immediately after surgery, but we quickly discovered independently that EEN really helped at that time. I think it was a mistake for that not to be recommended by the doctors. The exact timeline was something like: EEN for about 6 weeks (once we could tell that it was obviously helping at that time) then slowly adding more food in.

Unfortunately inflammation came back up somewhat after food was added, so our hope that the surgery would lead to a full remission turned out incorrect. So what ended up happening is that he went back to EEN after we gave food a good test until he started Stelara a few months later.

You might look at this and think, "wait a second, he still needed EEN and Stelara even after surgery? What good did surgery even do?" But his case was very very difficult, and we had already been using EEN for quite a while even while he was on Remicade and Entyvio in order to stave off disaster. I don't know whether or not Stelara would have worked if he hadn't gotten surgery, but I can say that his inflammation was much lower after surgery than before so I think there's a good chance it would not have worked until after the surgery knocked out most of the inflammation. His fecal calprotectin while not on medication went from 9000 before surgery to 600 after (now it's below 50 and he's eating a normal diet).

Anyway, if someone can stand it, they should try to do at least a few weeks of EEN during recovery from that surgery.

 

[BestyRocks]

Technically he was told he could have a normal diet almost immediately after surgery, but we quickly discovered independently that EEN really helped at that time. I think it was a mistake for that not to be recommended by the doctors. The exact timeline was something like: EEN for about 6 weeks (once we could tell that it was obviously helping at that time) then slowly adding more food in.

Unfortunately inflammation came back up somewhat after food was added, so our hope that the surgery would lead to a full remission turned out incorrect. So what ended up happening is that he went back to EEN after we gave food a good test until he started Stelara a few months later.

You might look at this and think, "wait a second, he still needed EEN and Stelara even after surgery? What good did surgery even do?" But his case was very very difficult, and we had already been using EEN for quite a while even while he was on Remicade and Entyvio in order to stave off disaster. I don't know whether or not Stelara would have worked if he hadn't gotten surgery, but I can say that his inflammation was much lower after surgery than before so I think there's a good chance it would not have worked until after the surgery knocked out most of the inflammation. His fecal calprotectin while not on medication went from 9000 before surgery to 600 after (now it's below 50 and he's eating a normal diet).

Anyway, if someone can stand it, they should try to do at least a few weeks of EEN during recovery from that surgery.

Thank you for the details on EEN.